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The "Ashley Treatment"Towards a Better Quality of Life for “Pillow Angels” 12/6/2007 Welcome to Ashley's Blog - prepared by her parentsThis site received more than
2.75 million clicks since January 2nd 2007 You may reach Ashley's parents by emailing pillowangel@hotmail.com "Every human life matters. There are no exceptions. There is no hierarchy. The presence of the divine can be seen in the tiniest and most vulnerable just as it can be seen in the strong and powerful." by Timothy Shriver We appreciate your interest in our daughter’s story, which we share to help other families who might learn from our experience and bring similar life changing benefits to their Pillow Angels. New: * Third anniversary update (January 2010) * Our first interview with the media, (published on March 12, 2008) * The “Ashley Treatment”, a one slide summary (updated on May 18, 2008)
To read about
Ashley's condition and the details of the treatment please visit the main article on the "Ashley Treatment"
(updated on 3/25/2007), available in PDF form for printing; also a one slide summary of the treatment (updated on 5/18/2008). For photos of our beautiful angel please visit Ashley along the years and the recently added Ashley in 2007. Also you might want to check how others reacted to the story by visiting the testimonies section (updated on 1/24/2007) or the support section (updated on 1/31/2007) that include, respectively, some powerful testimonies from parents and caregivers who have direct experience with Pillow Angels and statements of support from people who were moved by Ashley’s story. Here is a section for general updates (updated on 12/31/2007) and a section with media excerpts. If you feel touched by Ashley's story and want to aid a vulnerable child we strongly recommend a donation to The Smile Train, an organization that helps children worldwide who are born with cleft lips. The material on this web site is copyrighted. We hereby grant permission to use Ashley's photos and to quote from this web site and article as long as you clearly credit the site and include the following link: http://ashleytreatment.spaces.live.com/blog. Printing copies of the article for personal or educational use is permitted as long as you notify us of the purpose and the number of copies desired, and we ask for $1 per copy donation to The Smile Train per instructions at: http://www.smiletrain.org/. Please email us for any other usage. We are thankful to continue receiving your emails, which are a pleasure to read and a source of strength for us. We will post some of these often wonderful and touching messages. A quote from thousands of private emails that were
sent to PillowAngel@hotmail.com Received on Monday July 6th 2009 "I want to thank you for pioneering
this treatment to aid all the pillow angels out there in the world today.
As a pediatric nurse practitioner I cannot express the sheer horror of
watching children grow into adults and have their parents try to move them.
I take care of a 17 y.o. male with bilateral femoral and tibia fractures
(large bones in both legs) from turning him in bed. He weighs close to
200 lbs. Surgery to repair is not an option as he would never come off
the ventilator. I have another patient who is non-verbal with severe
fetal alcohol syndrome. When her menses come she screams, will not
let you put pads on her and throws the discharge at caregivers. She
cannot have Depo because of bone loss risks and we have been unable to
stabilize her cycle with the pill. I think if those people who are
appalled by the treatment would come and see the children in institutions,
developing sores because they are so hard to turn, listen to the parents talk
who had to put their children in a institution because they could not care for
them at home, and would see the bedridden children/adults who are raped and
then die during childbirth, the argument would cease. Thank you for
publicizing your treatment. I am hopeful that someday we may offer more
pillow angels this same gift and allow them to stay at home with the people
that love them." 1/12/2007 In the Media* In an article titled: “Ashley Revisited: A Response to the Critics” published
in the American Journal of Bioethics, January 2010, two bioethicists concluded as follows: “Many individuals and groups have been
critical of the decisions made by Ashley’s parents, physicians, and the
hospital ethics committee that supported the decision. While some of the
opposition has been grounded in distorted facts and misunderstandings, others
have raised important concerns. The purpose of this paper is to provide a brief
review of the case and the issues it raised, then address 25 distinct substantive
arguments that have been proposed as reasons that Ashley’s treatment might be
unethical. We conclude that while some important concerns have been raised, the
weight of these concerns is not sufficient to consider the interventions used
in Ashley’s case to be contrary to her best interests, nor are they sufficient
to preclude similar use of these interventions in the future for carefully
selected patients who might also benefit from them.” * In an article titled "Growth-Attenuation Therapy: Principles for Practice" published in Pediatrics magazine,
June 2009, two pediatric endocrinologist and two bioethicists concluded as
follows: "Our analysis suggests that growth attenuation is an
innovative and sufficiently safe therapy that offers the possibility of an
improved quality of life for nonambulatory children with profound cognitive
disability and their families. Pediatricians and other care providers should
include discussion of these options as part of anticipatory guidance around the
age of 3 years so that, if elected, potential clinically meaningful benefits of
growth-attenuation therapy can be realized."
* Our first interview with the media and CNN Health's update article on Ashley's story, March 12th, 2008
We thank CNN Health for their continued coverage of this story. Following are a few comments that we shared with them on their update article: 1. Children’s hospital maintained that the treatment is the right thing for Ashley. Furthermore, lawyers disagree about the legal issue; see the summary of our attorney’s findings in our update of May '07. It will be helpful to point this out for a more balanced representation of this side of the story. 2. Arthur Caplan seems to be a minority opinion among ethicists on this issue. There are many ethicists who spoke in support of the treatment in Ashley’s case, including: Norman Fost, Doug Diekema, George Dvorsky, Ben Willfond, Peter Singer, etc., whom we quote on our blog. 3. The article portrays a picture where Ashley’s parents seem to be the only ones in support of this treatment. In reality the treatment has broad support among doctors, ethicists, parents, and caregivers. The latter two categories have the direct experience and hence a unique insight. Even the sentiment of the general public is not represented in a balanced way; for example, consider the opinions posted by reader’s of the article itself. * "Love, Justice, & Humility: A Bioethicist Meets the 'Pillow Angel' ", a presentation at the Calvin College January Series by Dr. Doug Diekema , January 18th, 2008. * "Ethicist in Ashley case answers questions", A CNN Health interview with Dr. Doug Diekema, January 11th, 2007. * Following is the conclusion from an article by Peter Singer, professor of bioethics at Princeton University, titled “A Convenient Truth”, published in the New York Times, January 26th 2007: “What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. … Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.” * “Pillow Angel Ethics”, Time Magazine, January 7th, 2007 – Includes comments by Seattle Children's Dr. Gunther and Dr. Diekema * Excerpts from CNN Larry King Live, January 12th, 2007 … DIEKEMA: … And so we brought this [the Ashley
Treatment] to our full ethics committee and had that conversation. … DR. NORMAN FOST, BIOETHICS, UNIVERSITY OF WISCONSIN: I'm amazed at the intensity and extent of the emotion about this, Larry. It strikes me this is an incredibly caring couple who wanted to do what was best with their child. They got a lots of consultation and thought about it very carefully. They used treatments that were not experimental, as people claim. Estrogen has been around for decades, using it to slow down growth has been done before, taking the uterus out of profoundly retarded children to reduce the fears associated with menstruation and reduce the risk of cancer. These are standard things of pretty low risk and they were people who claim that the parents for their convenience, obviously, have not read the father's Web site, which was remarkable. These are good parents that wanted .... KING: Doctor, go ahead. I'm sorry. FOST: These are good parents who want to care for their child as home as long as possible and have her have as many experiences as she can. If she's smaller and lighter, they can take her more places, she can have a richer life. … TADA: The challenge is what about the groundwork this is laying for the future eugenics against people with disabilities? FOST: This claim of eugenics. Eugenics is about coercive government policy to sterilize people for fear that they would make more retarded children. That's not what's going on here. This is not state action. She did not have her uterus out because of fear of creating retarded children. It was done to help her, not society. ...
* Excerpts from CNN Nancy Grace, January 4th, 2007 … Let`s go to the lines. Betty in Indiana.
Hi, Betty. GRACE: Betty in Indiana,
stay with us. We`ll be right back. Back to Betty in Indiana.
Betty, you have a child with a similar condition. Continue. (COMMERCIAL BREAK)
* Excerpts from "The humbling true story of why this mother wants her disabled daughter to have her womb removed", October 12th 2007... Comparisons have been made between Katie and a nine-year-old American girl called Ashley X, who in 2004 had her womb and breasts removed and was given drugs to stunt her growth. Her parents argued that this would improve her comfort and that having a lighter, smaller body would make it easier to involve her in family activities. "I have nothing but sympathy for that family and it is something we would definitely have considered for Katie, but it is too late for her to have the same treatment," says Alison. ... I leave just as another exhausting, broken night looms. Whatever the rights or wrongs of this case - and the moral debate will surely continue to rage - selfish is the very last word you could use to describe Alison Thorpe.
She simply wants the best for her daughter.
* Excerpts from "Show some compassion", January 4th 2007The decision to suspend the growth of Ashley is not a slide towards eugenics but a solution that is right for her. ... In the end we must all take a step back and recognise that Ashley is an individual with unique needs. And that surely is the crux of the matter. There is no one size fits all solution to the needs of families like this. It is right that the solution for Ashley was debated by doctors and by an ethics committee. It would be quite wrong if it were implemented on anything other than a case-by-case basis. Ashley's life is as different from Wheelchair Dancer's as it is from mine. She needs her own solution - worked out by the people who care for her and love her. If this intervention will ensure that she has a better life then it is the right thing to do. In the end that is the only standard that can be used. I wish them luck. The Ashley TreatmentThe “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels”
By Ashley’s Mom and Dad
The original version was posted on January 2nd, 2007 Last updated on March 25th, 2007 The material on this web site is copyrighted. We hereby grant permission to use Ashley's photos and to quote from the article below as long as you clearly credit this web site and include the following link: http://ashleytreatment.spaces.live.com/blog. The March 25th update addresses many questions and miss-understandings that we encountered both in the media coverage and in private email to us. It also discusses additional benefits to the Ashley Treatment, which other parents brought to our attention. Towards the end we added a new section where we offer definitions of "Pillow Angel" and "Ashley Treatment". Ashley’s Story Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve. Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow. Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age. Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists. Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but can’t be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often gathered around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life! To express how intensely we feel about providing Ashley with the best care possible, we would like to quote from a private email that we received from a loving mother with her own 6 year old Pillow Angel: “In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of him is difficult, but it is never a burden. I am [his] eyes, ears and voice. He is my best friend, and I have dedicated my life to providing joy and comfort to him. To my last breath, everything I will ever do will be for him or because of him. I cannot adequately put into words the amount of love and devotion I have for my child. I am sure that you feel the same way about Ashley.” The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive, mental and physical developmental ability since about three months of age. Ashley has aged and grown in size but her mental and physical abilities have remained and will remain those of an infant. Faced with Ashley’s medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life. The result is the “Ashley Treatment.” Summary The Ashley Treatment is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors. Nearly three years after we started this process, and after the treatment was published in October, 2006 by Dr. Gunther and Dr. Diekema in a medical journal1 that resulted in an extensive and worldwide coverage by the press2 and dozens of public discussions3, we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden Pillow Angels; second, to address some misconceptions about the treatment and our motives for undertaking it. A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The Ashley Treatment goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits. Unlike what most people thought, the decision to pursue the Ashley Treatment was not a difficult one. Once we understood the options, problems, and benefits, the right course was clear to us. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age, a nine and a half year old body is more appropriate and provides her more dignity and integrity than a fully grown female body. We call it Ashley Treatment because:
The Ashley Treatment In early 2004 when Ashley was six and a half years old, we observed signs of early puberty. In a related conversation with Ashley’s doctor, Ashley’s Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight. We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects. The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose, as will be detailed below. In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort. We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues that we discuss below. The estrogen treatment would hasten both the onset of the menstrual cycle and breast growth. Bleeding during the treatment would likely be very difficult to control. It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:
The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication. Ashley was dealt a challenging life and the least that we can do as her loving parents and caregivers is to be diligent about maximizing her quality of life. The decision to move forward with the Ashley Treatment was not a difficult one for us as many seem to think. It was obvious to us that a reduction in Ashley’s height (and therefore weight), elimination of the menstrual cycle, and avoidance of large breasts would bring significant benefits to her health and comfort. The only downside that we could think of was the surgery itself; however, the involved surgery is commonly done and is not complicated. Hysterectomy is a 1.5 hour surgery of less involvement and risk than a Fundoplication (wrapping and sewing the upper part of the stomach around the esophagus), which is commonly provided to children like Ashley to mitigate reflux and vomiting. The breast bud removal is a minor surgery with minimal risk. Furthermore, we’re fortunate to have access to one of the best surgical facilities and teams at Seattle Children’s Hospital. If we were in a less developed locale or country with higher risk of surgery, we would have looked at this part of the analysis differently. Since the Ashley Treatment was new and unusual, Dr. Gunther scheduled us to present our case to the ethics committee at Seattle Children’s Hospital, which we did on May 5th 2004. The committee includes about 40 individuals from different disciplines and is evenly composed of men and women. After we presented our case we waited outside while the committee deliberated the issue. The committee chairman along with Doctor Diekema, ethics consultant, conveyed the committee’s decision to us, which was to entrust us with doing the right thing for Ashley. There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, sterilization is a side effect of the Ashley Treatment and not its intent. The combined hysterectomy, breast bud removal, and appendectomy surgery was performed without complications in July 2004. Ashley spent four days in the hospital under close supervision, and thanks to aggressive pain control her discomfort appeared minimal. In less than one month, Ashley’s incisions healed and she was back to normal; it’s remarkable how kids heal so much quicker than adults. Ashley’s Mom had had a C-section and knew first hand how Ashley would feel after surgery; thankfully, the recovery went much better than Mom anticipated. Shortly after the surgery and recovery, we started the high-dose estrogen therapy. We completed this treatment in December 2006 after two and a half years. During this whole period, we have observed no adverse consequences. Expenses of the surgery and of the therapy that followed, which we estimate to be about $30,000, was fully covered by insurance. Following we provide more details about the different aspects of the treatment and the related benefits. Limiting Final Height Using High-Dose Estrogen After the surgery, we started Ashley on a high-dose estrogen therapy using derma-patches that we changed every three days. Estrogen accelerates puberty and advances bone age until separate growth plates in the bones fuse together, see hand X-ray photos, halting growth and determining the extent of height. This occurs in both boys and girls. Therefore, Ashley did go through puberty; however, sooner than she would have. Dr. Gunther sees Ashley every three months to monitor:
Based on Dr. Gunther’s analysis, predictions, and estimates, this treatment is expected to reduce Ashley’s untreated height by 20% and weight by 40%. If we had started the treatment at a younger age, the benefits to Ashley would have been greater. More specifically, at this point Ashley is 53" (4' 5"), (average for a nine and a half year old girl), and has a bone age of 15 years (see photos), which implies that she is about 99% of her height. When Ashley was 6 years and 6 months old she was 48" (4' 0"), (75th percentile for her age at the time). Normal growth would have resulted in an adult height in the neighborhood of 66" (5' 6"), (Ashley’s Mom and Dad, are 5' 9" and 6' 1", respectively). Therefore, the treatment is expected to produce a height reduction of 13 inches (or 20%). Average weight of a 4' 5" woman is 75 lbs, while the average weight of a 5' 6" woman is around 125 lbs, so the treatment is expected to produce a weight reduction of 50 pounds (or 40%). We are currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an additional 50 pounds would make all the difference in our capacity to move her. Furthermore, other than her Mom and Dad the only additional care givers entrusted to Ashley’s care are her two Grandmothers, who find Ashley’s weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers. The main benefit of the height and weight reduction is that Ashley can be moved considerably more often, which is extremely beneficial to her health and well being. Currently, one person can carry Ashley, versus requiring two people or a hoisting harness and ropes, should she have grown larger. As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints. From the hundreds of emails that we received from families that had or have their own Pillow Angels, a significant benefit to the size reduction is the ability of families to keep caring for their loved ones at home. We read one testimony after another about how heart breaking it was for certain families to reach a point of inability to care for their Pillow Angels at home, and hence end up with no choice but to place them in an institution. This consideration was not a factor for us pursuing the Ashley Treatment, since the possibility of reaching the point of not being able to care for Ashley at home never crossed our minds (we’re still young and able and perhaps naïve about the future). However, with the extensive input that we’ve received from other families, it is now abundantly clear to us that keeping Pillow Angels under the care of their families at home throughout their lives, is a very important benefit that the Ashley Treatment brings to Pillow Angels and their families. Furthermore, we strongly believe that the comfort and quality of life benefits of the Ashley Treatment are even more relevant if Pillow Angels end up in institutions, which was indicated to us in emails from many care givers. A doctor suggested that Ashley will be less prone to infections as a result of her smaller size. Bedridden individuals are more susceptible to potentially fatal infections. Both the reduction in size in itself, and the increased movement and resulting blood circulation are expected to reduce the occurrence and magnitude of such infections including:
Parents of other Pillow Angels suggested additional benefits of the Ashley Treatment. Ashley, like many children in her condition, has a serious case of scoliosis (curvature of the spine), whose progression often reaches a point of requiring quite an involved scoliosis surgery. Halting growth should slow down or may even halt the progression of scoliosis. We also learned of Pillow Angels with diseases that cause their bones to be brittle. An orthopedic surgeon suggested to a mother with one of these Pillow Angels that halting growth will reduce incidences of bone fractures and hence the need for his services. These benefits make intuitive sense and so we decided to mention them; however, at this point we do not know of studies to reference that provide us with objective and quantitative understanding of them Furthermore, Ashley remaining child sized has other practical ramifications such as:
Avoiding Menstrual Discomfort through a Hysterectomy The Hysterectomy involved removing Ashley’s uterus but keeping her ovaries to maintain her hormonal cycle and the generation of her natural hormones. Ashley has no need for her uterus since she will not be bearing children. Hysterectomy prevents the discomfort, pain, cramps and bleeding that are so commonly associated with the menstrual cycle. Many emails we received testify to how painful these symptoms are due to the cramping of the uterus and how hard they are on Pillow Angels. Additional and incidental benefits to hysterectomy include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure. Preventing Breast Growth by Removing the Early Breast Buds Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage.Ashley’s aunt had a breast reduction operation at age 19 and Ashley’s Mom considered one at a similar age, but opted against it so not to adversely affect future breast feeding. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts. Though this step in the treatment might seem extreme to some, it is a simple procedure when the breasts are still undeveloped. This operation involved removing Ashley’s subcutaneous, almond-sized breast buds, which contain the milk glands, while keeping the areolas and nipples intact. This surgery was done with small incisions below the areola, the slight scars almost disappeared a month after the surgery. This operation is akin to removing a birthmark and is a very different surgery from a mastectomy on an adult woman with developed breasts. Furthermore, when done in conjunction with the hysterectomy this step poses little to no additional recovery time or surgery risk (for example, anesthesia is done once). Additional and incidental benefits to breast bud removal include:
Of all the things we wanted to do to provide lasting physical comfort and quality of life to Ashley, the breast bud removal posed the biggest challenge to Ashley’s doctors, and to the ethics committee. We overcame this reluctance by detailing the benefits above, recounting Ashley’s family history of breast problems, and pointing out the fact that the same procedure is commonly provided to males for cosmetic reasons and to mitigate unwanted breast development (it is called Gynecomastia). In boys who might receive high-dose estrogen therapy in the future, breast growth will become an important consideration, and can be dealt with as in Ashley’s case. Addressing some Common Misconceptions From observing early media coverage and visiting certain online discussion groups, it became clear to us that there are several misconceptions or misunderstandings about the treatment that we provided for our daughter and our motivation for pursuing it, which we address here. We are thankful to the support and prayers from many, and we included some of the testimonies and supportive comments on Ashley’s blog. At the same time we’re surprised at the volume and magnitude of the critical comments. We carefully reviewed these comments: they seemed to us to be gut reactions without depth or rational consideration of the situation, the treatment, or the motivation behind it, which we hope this article sheds more light on. It seems that people are thinking of a child who is mostly normal or who might progress to approach normal. As we stated earlier, Ashley has not shown material progress in her mental ability since she was three months of age, she is dependent on us in every way (including position change), she can’t hold a toy, and we’re not sure she recognizes us. To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemo or radiation therapy) or more involved surgery (extensive plastic surgery face reconstruction), than what the Ashley Treatment entails. We strongly believe that the benefits that we’re seeking for Ashley are not any less worthy than these other unfortunate situations entail. We hope that by now it is clear that the Ashley Treatment is about improving Ashley’s quality of life and not about convenience to her caregivers. Ashley’s biggest challenge is discomfort and boredom and the Ashley Treatment goes straight to the heart of this challenge. It is common for Ashley to be uncomfortable or to be bored. Even though Ashley’s level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow, a sneeze, or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts and a constricting bra. Also, without the treatment, Ashley could not be moved as frequently or be as included in family life, and we would not experience the joy of being an intact family as often. If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article4: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden. She brings a lot of love to our hearts as we’re sure all Pillow Angels bring their families. In the words of a mother who lost her Pillow Angel: “While I would never want her to go through the discomfort she endured during her life, I would give all I have for one more snuggle, one more gaze from her radiant eyes.” If there is a prize for those who have the record of how often they are told “I Love You”, we’re certain that these kids would win it effortlessly. Ashley’s presence in our home kindles abundant feelings of love in all members of the family. It is a joy just being with her, she brings nourishment to our souls; it is a pleasure to visit with her and sweet talk her and observe her innocent and genuine smile. Ashley sets the barometer in our home, when she is happy we’re happy and when she is not we’re not. We are very fortunate that Ashley is a healthy child, outside her abnormal mental development, and is in a stable condition. We’re describing our unique experience which is not universal in this regard, and most likely not even representative. We fully understand that different Pillow Angels have different problems and pose different challenges to their caregivers, and that different families have different abilities and resources to provide for their special needs children. The decision to move forward with this treatment, unlike what most have thought, was not difficult. Ever since we researched the idea and with Ashley’s doctor’s confirmation that it could be done, we focused squarely on getting it done as quickly as we could to maximize the benefits. It was clear to us that the lifelong benefits to Ashley by far outweigh risk factors associated with the surgery. In contrast, the decision to insert the feeding tube into Ashley’s stomach and associated surgery was a lot harder for us. Ashley’s doctor suggested that we put the feeding tube in at 5 months of age because it was taking up to eight hours a day to get enough nutrition in her through a bottle. We delayed the tube insertion for years in order to spare Ashley the surgery. At five years of age we finally decided to go for the surgery, since almost every time Ashley would catch a cold she would completely refuse her bottle for days and end up dehydrated and in the emergency room. Furthermore, we did not pursue this treatment with the intention of prolonging Ashley’s care at home. We would never turn the care of Ashley over to strangers even if she had grown tall and heavy. In the extreme, even an Ashley at 300 pounds, would still be at home and we would figure out a way to take care of her. The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature. Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life. Knowingly allowing avoidable suffering for a helpless and disabled child can’t be a good thing in the eyes of God. Furthermore, the God we know wants us to actively share our experience and learning with the rest of the world to help all Pillow Angels and other special need children in reaping the benefits of the Ashley Treatment. We want to avoid sensationalism or philosophical debates about what we did and why we did it. We’d rather care for and enjoy Ashley than get into such endless debates. In our opinion, only parents with special-needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers. Furthermore, in the case of the female aspects of the treatment, women are in a better position to relate to these aspects and the benefits for which they are intended. What this Means to Other Families with Pillow Angels We’ve received hundreds of emails and there are hundreds of postings in dozens of blogs by parents with special need children, indicating that they wish they had the option of the Ashley Treatment before their kids reached their adult size and how this would have changed their lives significantly. You can see a sampling of these points of view in the testimonies section of Ashley’s blog. One mother explained in graphic detail how heart breaking it was for her to have to let her daughter go to a care center since “I am tired, my body is breaking down rapidly, and emotionally drained” and she stopped being able to care for her daughter at home. It is this type of family that we hope our experience will help some day. Clearly, the Ashley Treatment is not for all disabled kids. Our daughter’s condition pointed to a clear decision where the benefits far outweigh the risks and short term discomfort associated with surgery. Families of other kids may likewise find the Ashley Treatment to be the right approach for them. It is our hope that this treatment becomes well-accepted and available to such families, so they can bring its benefits to their special needs child if appropriate and at an optimal age in order to obtain the most benefits. Clearly, a decision on the applicability of the Ashley Treatment needs to be made upon careful evaluation of their child’s unique condition, with help from their doctors, and careful evaluation of the benefits that might be obtained. We believe the parents are in the best position to make this evaluation and ultimately make this decision. In addition, our understanding is that the growth limiting aspect of the Ashley Treatment is applicable to male children. It seems to us that it even makes more sense in their case, since boys tend to grow taller and bigger. In boys hysterectomy will not be an issue; however, since estrogen will result in breast growth, the breast bud removal surgery would still need to be considered. Definitions Since the two terms below that we introduced in this paper have become of common use, we offer the following definitions that reflect our original intentions behind them. Pillow Angel: Affectionate nickname for Ashley X, now generally refers to people with a cognitive and mental developmental level that will never exceed that of a 6-month old child as well as associated extreme physical limitations, so they will never be able to walk or talk or in some cases even hold up their head or change position in bed. Pillow Angels are entirely dependent on their caregivers. Ashley Treatment: A collection of medical procedures intended to enhance the quality of life of Pillow Angels. It includes limiting adult height through high-dose estrogen therapy, and for females it includes a hysterectomy and breast bud removal prior to the estrogen therapy in order to prevent discomfort associated with menstrual cramps and developed breasts. It is generally acknowledged that Pillow Angels are most comfortable and attain the highest possible quality of life in the loving care of their own family. The Ashley Treatment improves the quality of life of Pillow Angels, including helping their families continue to care for them at home. The treatment was first applied to a Pillow Angel named Ashley at Seattle Children’s Hospital, and was first discussed in a medical article published in October 2006 and in a blog by Ashley’s parents published on January 2nd 2007. The treatment was widely publicized by the media worldwide in early January 2007 and was the subject of controversy. Acknowledgment Our sincerest thanks to Ashley’s doctors and the surgery team at Seattle Children’s for their world class expertise, competence and support throughout this pioneering treatment. Special thanks to Doctor Daniel F. Gunther, without whose courage, confidence, knowledge, open mindedness and unwavering support the treatment would not have been realized and the idea would have remained just an idea. We know that many endocrinologists would not have ventured into such new territory. It is our, and Ashley’s luck, that we knocked on the right door. We thank our good friend Margaret Russell for her tireless support in reviewing and editing many versions of this article, which helped clarify its message significantly. We thank our family and friends for their love and support throughout the Ashley journey including her treatment. References [1] “Attenuating Growth in Children with Profound Developmental Disability, A New Approach to an Old Dilemma”, Archives of Pediatrics & Adolescent Medicine, Vol. 160, No. 10, October 2006, Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH. [2] This story topped the Health section of Google News between January 5th and January 8th – there have been more than 600 related articles worldwide. [3] “Pillow Angel Parents Deserve Credit, Not Blame”, BLOG: SCIAM OBSERVATIONS, Opinions, arguments and analyses from the editors of Scientific American, January 4th, 2007. [4] “Helping families care for the helpless”, George Dvorsky, Sentient Developments, Institute for Ethics and Emerging Technologies, November 6th, 2006. 1/8/2007 Updates/Bulletin
Update - January 13th, 2010 (third anniversary)
"The panel session at the
Pediatric Academic Societies Meetings went very well. The audience included
about 200 pediatricians, many of them endocrinologists. ... Although many of
the panelists raised concerns, most seemed supportive of growth attenuation
(the focus of the panel) for some children. The audience seemed very receptive.
Perhaps most surprising, was that when we asked for a show of hands, about half
of the room said they had been approached by a family seeking growth
attenuation, and about a dozen raised their hands when asked if they had
offered it to a family. Everybody seemed agreed that it should be studies or
that a registry should be created if this moves forward. It should be
interesting to see what happens in the endocrine community after that
discussion."
"Our analysis suggests that growth attenuation is an
innovative and sufficiently safe therapy that offers the possibility of an
improved quality of life for nonambulatory children with profound cognitive
disability and their families. Pediatricians and other care providers should
include discussion of these options as part of anticipatory guidance around the
age of 3 years so that, if elected, potential clinically meaningful benefits of
growth-attenuation therapy can be realized."
“Many individuals and groups have been
critical of the decisions made by Ashley’s parents, physicians, and the
hospital ethics committee that supported the decision. While some of the
opposition has been grounded in distorted facts and misunderstandings, others
have raised important concerns. The purpose of this paper is to provide a brief
review of the case and the issues it raised, then address 25 distinct substantive
arguments that have been proposed as reasons that Ashley’s treatment might be
unethical. We conclude that while some important concerns have been raised, the
weight of these concerns is not sufficient to consider the interventions used
in Ashley’s case to be contrary to her best interests, nor are they sufficient
to preclude similar use of these interventions in the future for carefully
selected patients who might also benefit from them.”
Update – December 31st , 2007 (first anniversary) *
Ashley is doing very well, she is in stable health (down to reflux medicine only!) and often happy and
content under our loving care; see her
photos from 2007. She is profoundly dependent on us but also profoundly precious
to us, we are privileged to have her in our life. * Ashley today weighs 63 pounds and is 53 inches (4' 5") tall, unchanged from a year ago when we stopped the estrogen therapy! We so wish we could share these success results with Dr. Gunther, who we miss dearly. * We recently finished reading and categorizing a total of 4,705 emails that were sent to pillowangel@hotmail.com mostly in January. Two hundred of the emails were from media agencies worldwide. Out of the 3,903 messages that took a position on the Ashley Treatment 3,665 (93.9%) were in support and 238 (6.1%) were critical of the treatment: o 1,120 were in support of the treatment and came from family members or caregivers who have direct experience with Pillow Angels. o 159 messages came from families who indicated that they are pursuing or evaluating the treatment for their Pillow Angels. o 2,545 additional support messages came from others (i.e., no indication of direct experience with Pillow Angels). o 238 messages were critical of the Ashley Treatment, and many of these came from individuals who have disabilities themselves and who reacted to feelings of how inappropriate the treatment would be for them. o Also of note, is that 115 messages indicated a reversal of opinion about the treatment from negative (based on sensational headlines and misleading media coverage) to strong support after seeing a well cared for Ashley in the photos and reading our article. Many of those apologized for judging us in reaction to headlines and without seeking the facts first.
These numbers imply that the overwhelming majority of those who took the time to visit Ashley's blog (the only way to obtain the email address) and see her photos were in support. More importantly, virtually all family members and caregivers who indicated a direct experience with Pillow Angels where in support of the treatment. We are evaluating ways to share more of this input, which includes well written and informative gems, while protecting the privacy of those who trusted us with their real life stories.
* During
the course of the year we had the fortune of meeting many Pillow Angels and
their families who are pursuing or evaluation the Ashley Treatment. We’re doing
what we can to share our experience and help these families help their precious
ones. Our advice is that they proceed with focus on the interest of their child;
all other considerations should take a back seat to our sacred responsibility
as parents to do what we believe is right for our children. We recommend they
proceed diligently, carefully and discretely and work with the right
specialists to keep their child on a safe path. Since compiling and documenting what is learned from the first wave of therapies will help future generations of Pillow Angels, we encourage these pioneering families to contact us (pillowangel@hotmail.com). We are evaluating the possibility of establishing a safe and private forum to share notes and help one another. Hopefully, this grassroots effort will pave the way towards a formal study on the different aspects of the Ashley Treatment. * In order to continue Dr. Gunther’s courageous and pioneering work in helping our daughter attain a better quality of life; we’ve compiled his notes and ours from Ashley’s estrogen therapy together with related lab results and X-rays, to share with families and Doctors who are evaluating the treatment for their Pillow Angels. Given that Ashley is the first, as far as we know, to receive this therapy, we want to make sure that Doctor Gunther's careful documentation of her therapy is available to help others. *
Performing a Google search for the “Ashley Treatment” and “Pillow
Angel” phrases (which were incepted in Ashley’s article of January 2nd 2007)
results with 20,200 and 5,090 page hits, respectively! Ashley’s blog is usually
the first or second page that results from these searches, which is an
indication of the continued high traffic of visitors throughout the year for a
total of 2.52 million clicks so far. Even though the term “Pillow Angel” was
criticized by a few, it was cheered and embraced by most families and
caregivers (i.e., those with direct experience with Pillow Angels) in their
correspondence with us.
* We've added a one-slide summary on the Ashley Treatment, which enumerates the key points about Ashley's condition, the treatment and its benefits to Ashley, and some concluding remarks. Update - October 12th , 2007
The tragic loss of Dr. Gunther on September 30th We are deeply shocked and saddened to learn of the sudden death of Doctor Daniel Gunther. His tragic death is a tremendous loss, especially to other vulnerable kids like Ashley and their families, to whom he represented hope. Our prayers are with Dr. Gunther’s family. Following are gems emailed to pillowangel@hotmail.com:
God Bless Ashley and her family always. It sounds like Dr. Gunther was amazing. It is a shame that he resorted to this, knowing what he has done for your family and opening the eyes of the world for others. I can only pray that his work will continue on. I hope Ashley and her story give the world the benefit that courageous doctor gave you. Dr. Daniel F. Gunther sounds like an incredible and caring doctor who went to great lengths to do the "right thing". I wish to extend my condolences for the tragic loss of such a generous doctor who was 'doctor enough' to have dared let his humanity reign supreme. Regardless of how some may 'armchair quarterback' his work (as I think you Americans say - I'm from 'down under') I so respect his fortitude in not taking the 'easy road out' - he could have chosen to send you away when you came to him, as many lesser doctors would have! I am devastated to learn of Dr. Gunther's suicide. When I heard about Ashley's situation, and what you had decided to do in order to continue to care for her properly, I was so glad that you had been able to find a physician who cared enough for Ashley's future to help her, and you. I couldn't believe all of the hostility and flak that were directed toward Dr. Gunther, once his article about Ashley's care was published. NO ONE has the right to judge the difficult decisions parents must make in a situation like yours. Dr. Gunther did what he did from compassion, and selflessness. Ashley is your "pillow angel". Now she has an angel, too : Dr. Gunther. May God bless him always. I wish to express my total support of you and your doctors in the care of your precious child! I am outraged at the nature of comments and coverage. My heart is broken over the death of this wonderful man, who came as your 'rescuer.' There is more I wish to say, but I will do that later when I have gathered my thoughts.
“I am sure that you were saddened by the death of Dr. Gunther, if I understand fully what this Dr. did for your family and other’s like [yours] he will be sadly missed. One can only hope that others will take up his compassion. … Often the Hippocratic Oath is miss-quoted, to say that the prime doctors role is to save life, where the true oath is to maintain the quality of life. You and the doctor made the correct decision for your daughter, had I been in a similar situation I only wish that I could hope for your strength.” I am very sorry to hear about the death of Dr. Gunther. I commend him as a researcher, and I hope his family and friends see his work as revolutionary and sincere. He was willing to look outside the norm to improve quality of life for a patient, not simply follow the status quo in treatment for those with severe disabilities. I hope the circumstances of his passing do not overshadow the fact that you and he did what was best for Ashley and not yourselves. We need more researchers and physicians like him. I am so sorry about the doctor committing suicide. It is really a shame. I know that sometimes the mind can lie to us and make us feel hopeless and so does God. When he sees God, I know that God will bless him abundantly for having helped Ashley. I hope that in the future, the Ashley Treatment will be available to all pillow angels. You guys are awesome and are changing other peoples lives for the better. I am writing to express my sympathy over the death of Dr. Gunther. I see from your blog that you held him in high regard and I'm sure his passing will affect you greatly. I feel his work with your daughter was warranted and done from the heart. “I am so saddened by the news, as I bet you are as well. Dr. Gunther has been my daughter's doctor for several years now, and I can't believe I just talked to him on the phone less than two weeks ago. I was aware of Ashley and the news surrounding her, and my thoughts were and still are, I would do the same. I am thankful to you for being so brave, to advocate for your daughter the way that you did, and I'm thankful that Dr. Gunther once again did the best he could for one of his patients, even if it meant opening the doors to a big controversy. When I heard your story, Ashley's story, I remember thinking, "Thank you. This will help others (like ourselves and our daughter) to have more options when the time comes. While I'm sure you are so exhausted from the controversy and the devastating news about Dr. Gunther, I just feel the need to reach out and let you know, you're not alone. Those who criticize can't know how it feels to be in your position, because if they did, it seems obvious they would choose the path that you have chosen. For those of us who do know what you're going through or at least have some sense as it "hits us close to home", we thank you and send our heartfelt thoughts your way. We'll never forget Dr. Gunther, and it's incredibly sad that for whatever reason he did this, he must not have known how much he meant to all of us, how much we counted on his opinions and decisions in the care of our children, and how much he will be missed.”
Update - May 8th, 2007 Position of Ashley's Parents on the Legal Findings on hysterectomy As Ashley's loving parents we support the vigilance of WPAS in their effort to protect the vulnerable members of our society. In 2004 Ashley was indeed given a hysterectomy without a court order. Prior to the surgery, we had consulted with a disability lawyer [see Exhibit-O for the full report] and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley’s case since: 1- Given Ashley’s developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be. 2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s. As responsible and loving parents, deeply concerned for the wellbeing of our child, we provided a better quality of life for our Ashley, who is doing very well under our love and care. We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles. We appreciate your continued support, prayers, well wishes, and respect of our privacy. Update - January 9th, 2007 Upon reviewing some press and TV coverage, we wish the media would be more careful in reading our story and more precise in interpreting and reporting it. We’ve seen many instances of sensationalist spin and misinterpretation. For example, the media can explain the motivation for creating this web site as “parents defend …” or “parents share their learned lessons …” Most media chose the former, while our motivation is actually the latter. Examples of misinterpretation that we’ve seen include: 1. “Parents stop the growth of their daughter ...” our daughter stopped growing mentally and intellectually years ago, when she was a few months old. 2. “Parents removed breasts so that daughter is not sexualized …” her almond-sized breast buds (not breasts) were removed to prevent her breasts from growing uncomfortably large; we cited the non-sexualization as a side benefit. 3. Some articles fail to clarify up front that our daughter is severely disabled, in a small and extreme category of disability, leaving their audience with the image of a mildly disabled girl -- which is what most people have a direct experience with -- which would indeed make the Ashley Treatment shockingly inappropriate . Update – January 7th, 2007 Upon much reflection this weekend, we’ve decided that we will continue to communicate via this web site. We politely decline the invitations for direct engagement with the media. The material we have here tells our story in great detail. We appreciate your respect for our privacy. We find the worldwide attention to Ashley’s story both gratifying and overwhelming. Since we’ve published this web site the night of January 2nd, the story:
We’re trying to find a balance between attending to our lives and our kids, as we should, and following the unfolding of this phenomenon, continuing to communicate our thoughts, and planning any follow-up steps. We truly appreciate the thoughtful comments and touching support that we're continually receiving. We chose to share a tiny sampling below, mostly from individuals who have a direct experience similar to Ashley’s story. This support has been a tremendous source of energy for us and is motivating us to think how we might use this worldwide attention for the wellbeing of other families with Pillow Angels. If you have thoughts for us about next steps and if you have support stories we encourage you to share with us via email to pillowangel@hotmail.com. Your input will be used in the future to help other families who might benefit from our experience. We will read every one of your emails and we will treasure some that we will read over and over again. We’ve been deeply moved by some of you sharing your private stories and photos with us, your Pillow Angels will forever be in our hearts. Here are our key message points to the press:
1. Ashley is doing well and is healthy, happy, and lovingly cared for. 2. The "Ashley Treatment" is intended to improve our daughter's quality of life. 3. Providing our daughter with this treatment was an easy decision because the lifelong benefits by far outweigh the risk and short-term discomfort associated with the surgery. 4. We wrote the article and published this web site to inform and help other families of Pillow Angels who might benefit from our experience. 5. With the overwhelming thoughtful support that we are receiving we feel even more strongly than before that what we did for Ashley should be more widely known and available to benefit those children who—like Ashley—face extreme lifetime difficulties. 6. Please make sure to read the five emphasized paragraphs in the first two sections of the article, since they convey the essence of Ashley's story. Testimonies from other FamiliesTestimonies from other Families or Practitioners These testimonies from other families with Pillow Angels or practitioners who care for them share real life experiences that support every point we make in the “Ashley Treatment” article, and illustrate how the benefits that we are pursuing for Ashley are indeed real and life changing. “My heart is with you. I have a 44 yr. old daughter that has gone through 22 surguries that I feel would have, could have been avoided if I'd done as you have done. The heartache, the pain that could have been avoided if I'd done as you have done. My daughter is now placed in a home but I feel I have failed her. I would give anything to have her with me and be able to be her caregiver. God bless you both and your child.” “How different life will be for Ashley, your little 'pillow angel' then it was for Jimmy my brother who was 'profoundly retarded' and as a 'defectiive child' was placed in a state hospital and 'warehoused' for 25 years until transfered to a nursing home for further warehousing. Jimmy is at peace now. He died at age 48. Your decisions are the right one and any family member of a 'pillow angel' can not help but agree with you.“ “I just wanted to tell you that I applaud your strength, courage, and strong mind to find this help for Ashley. I believe this is a true gateway for other families in your situation. The Lord chose you to be Ashley's parents because He knew that you would follow through the hard times and lean on Him to provide this gateway. I saw my aunt go through the blessings and challeges of her pillow angel that passed away at the age of 18. She was blessed to have her those many years, but had to put her in a home because of the challeges that you foresaw. I also have a three month old and can only imagine her being in this state the rest of her life. My prayers are with you that you continue to lean on God for your strength. Again, I applaud you for finding the available resources and using the God given ablity to help your precious angel. I just wanted to send encouragement to stay on the healthy path you are on.“ “I just felt compelled to e-mail you. I too, have a daughter with similar disabilities-she even looks like Ashley. She is now 16 and had a severe brain injury at birth (no known cause although we believe it was related to a vacuum delivery). Sheis blind, has seizures, a shunt, CP, can't sit, stand, walk or does not know who we are. She is now about 100 pounds and is extremely heavy and in a lot of pain. It is extremely dificult to live with this and to watch your daughter go through so much pain (due to her CP and bilaternal hip dysplasia due to CP). If we had know about this procedure back in the 90's we probably would have moved forward with it. My daughter has no other disabilities either, will develop normally, all internal organs are perfect and will live a normal life. Only parents who have gone through this would understand. I understand your desire to make life easier for Ashley as well as the rest of your family. God bless you and have a wonderful New Year. “ “Not quiet sure how to start this letter...Firstly I think your amazing to have discovered a "solution" to many peoples problems. If that makes sense. We have a severly disabled daughter her name is Paige, and she is beautiful. She suffered perinatal Hypoxia at birth an now has severe cerebral Palsy, Epilepsy and Mycrocephaly. her brain has not grown since she was born. So as you can imagine i am very interested and am going to approach our pediatrician here in New Zealand as paige started Puberty about a year ago and she has severe Epilepsy many things start seizures ie pain, being uncomfortable ect. We also have a little help at home and the help are getting to the state were they are unable to lift her. She is now 8yrs of age and beautiful. So thank you i was inspired by your story.“ “My cousin, who is like Ashley, recently died because she was growing older. She developed some kind of disease due to unhygienic menstrual practices. The quality of life she received from her parents degraded once she grew up. Whom shall we blame for this? Parents who have three more kids and are working full time to provide better life for these kids? I support Ashley's parents' decision. Those talking about human rights have no idea what it is while taking care of these kids.” “I've been a special needs peds nurse. My own special needs niece died at age 15 for resp. failure caused from a GM seizure caused from, out of control seizures caused from, hormonal changes during puberty!!!! She was in horrid pain from her cycle. She stopped using her crawler due to so much pain and discomfort from her size D breast. She weighed 100 lbs and we had no mechanical lifts and no waiver program to buy her one. IF WE COULD HAVE HAD "THE ASHLEY TREATMENT", I BELIEVE TALISA WOULD BE ALIVE TODAY. WE MISS HER EVERYDAY AND ONLY HAVE A GRAVE TO LOOK UPON. YOU DID THE RIGHT THING! DONT LISTEN TO THESE INGNORANT PEOPLE WHO HAVE NO CLUE. GOD BLESS YOU AND GIVE ASHLEY A KISS FROM ALL OF US! YOU DID THE RIGHT THING.” “I have a 3 year old son with Lissencephaly (Miller-Dieker Syndrome) who is very similar to Ashley. One of my greatest fears is how will I take care of my precious son as he grows?? There is very little help now when he is still small and cute and so baby-like to outsiders. I have often thought how cruel to have a body grow when his brain is forever that of an infant. He loves to be held and cuddled and what a shame to have him lose one of his greatest joys because his mom can't lift him anymore. I ask anyone in doubt of your situation to spend a day with a family caring for a profoundly disabled child and see firsthand how emotionally & physically draining it can be. I love my son too much to hand over his care to anyone else and feel that the love & care he gets at home has brought him farther than the doctors ever said he would get. I truly feel you have given your daughter a longer quality of life and send my thoughts & prayer to all of you.” “I've just stumbled across your story on the net. Without taking up too much of your time I would like to say that "Ashley's Treatment" is a wise choice. I was a caregiver to my disabled brother for many years before his death at 16. He was a tall, heavier child who suffered from bedsores. At one point he suffered a broken leg from being dropped during transit. He was too big to move to the couch for cuddles and required a special vehicle to go anywhere. If he had remained small and light we could have taken him on more trips, brought him into bed with us, cuddled him, carried him in our arms.” “I am the mother of a special needs child. I honestly don't know what I would do in this instance. I try to live one day at a time. My little girl will eventually be too large for me to lift and I worry constantly about what will happen to her then. I applaud you for doing the best that you can to care for your daughter at home. I can only hope that the world becomes more aware of the struggles that parents of disabled children face and will reach out to help them. Our children are beautiful and we are thankful for every moment that we have with them. Is it too much to ask that they not suffer needlessly? I have a friend with a severely disabled teenage daughter. When she has her period she does nothing but scream. Why is this necessary? It is just another thing that makes life difficult for this wonderful girl and her family. God Bless Ashley and her parents. “ “I just had to e-mail you and let you know what a beautiful daughter you have. She could pass for being my daughters twin. My daughter was severly handicapped and after reading the article in People, I had to write you. DO NOT let anyone tell you what you did was wrong. I took care of my daughter Samantha for 19 years until July 05 when she passed away. I understand why you has her growth stopped. If I had known about it, I would have considered it myself. For all of those that do not know what it is like to watch as our children cannot feed themselves, play with their siblings or grow to be productive adults, shame on them for passing judgement. I watched as my daughter would go through her menstral cycle with cramping and discomfort. My husband and I know the physical strain it can put on a parent moving our children from the bed to the bathroom and vice versa. You are so brave. Thank you. If more people knew the sacrifices parents of handicapped children go through, they would not pass judgement. I wish you and your family only the best in the future. You will forever be in my thoughts and prayers. All of my love to all of you “ “There are people who are like you and believe in you. We are a family in New Jersey who have a severely disabled girl named Julia. Very similar to Ashley, maybe a little worse. Just never let ANYONE tell you what is right or wrong when it comes to your daughter. I know your decision came with much thought, heart, and tears. You made the right decision and I admire you. I hope you always do what's right for your daughter because she is YOUR daughter and like me you will do what's best for her. Keep your heads high and just keep loving that beautiful girl. I wish you peace and many more happy moments with your family.“ “After reading your web site it's obvious you did the treatment for Ashley's comfort. I was a care giver for the disabled for 20 years and agree Ashley will have a better quality life. I have witnessed the sadness that families feel when they are forced to put their family member in a home. When the only reason is because they couldn't take care of them because of their size it was heart breaking. I truly believe a lot of severely disabled adults would have benefited from the Ashley Treatment. Only people who have taken care of, loved a pillow angel will understand. I applaud you for really thinking of your daughters future. I'm sure the reaction from some people is disheartening but it's only out of ignorance.“ “I would first of all like to commend you for your strength and love that you have for your child. I have a Bachelors of Science in Nursing--basically an RN. I have cared for adults like your child and applaud the decision that you made. For people to judge you is wrong. They do not know the pain and discomfort that these people quietly suffer. As a new graduate we were always taught that the family is extremely important to the patients treatment. Caregiver burnout leads to inadequate care for the patient. Since the child has the mentally and will always have the mentally of a child there isn't any reason for her to experience the pangs of adulthood. Her life will be better for this. I am watching Nancy Grace at this time, and I hear her speak of things that she knows nothing about. She compares your child to someone that I'm sure is just disabled. Disability is one thing, but when your mind fails to progress we should be proactive and stop thinking of ourselves and what the world will think. You did just that, the love you have for your daughter has shown through and perhaps it will be that beacon of light that will show the world that we can and should do more for those like Ashley. I will keep you in my prayers. Keep your head up during these times of unwarranted judgement. They forget that we should strive to understand and learn not condem and throw stones. People always fear that which they do not know.” “I read Ashley's story in this week's People magazine, and I immeadiatly wanted to know more about her and your story. I have worked with adults with disabilities for the past ten years, and last years my husband and I decided that we wanted to do more. So when a mutual friend came to us because she knew a young married couple who was caring for their nephew (who had cerebral palsey) and they were stuggling with giving him the care he needed. She asked if we would be interested in taking Tyler into our home and giving him the love and care he needed and so much deserved. We immeadiatly went to meet him and he has been with us since January 2006. We have plans to adopt him as soon as we can. He is about five foot tall, and weighs about 130 pounds. I am used to lifting and transfering clients that I worked with, but I do have to admit after doing it day in and day out it does start to hurt your back. And not only is it hurting our backs but it also hurts Tyler. We are currently in the process of getting him the lifts he needs for inside the house and in the van. I can completly understand all aspects of why you would want to give Ashley the treatments you have. There is no reason for her to have any more pain then she has already gone through. I often asked myself why parents of the clients I worked with would let their daughters go through the pain of a menstrual cycle, when they didn't have to. I sure you will find support from lots of parents that wish they could of gave their children the same treatment you have given Ashley. And if you do not just remember to stay strong and keep what is most important in mind, "What is best for Ashley and her quality of Life." Our family's thoughts and prayers will be with you.” “I have been in the medical field for 37 years, as a Radiological Technologist (!0) and for the last 27 years as an Ultrasound Technologist. I have seen first hand the scared faces of disabled children and adults, having to have procedures that they did not understand. These procedures were necessary to give them the best care, but the size of some of these persons was a factor in how much they had to endure. I wish that was the only issue that I felt compelled to share, but the next is the most compelling. I have had to do too many ultrasounds on females of all ages that had been raped by evil sick people. That has been the most pitiful experience for these disabled females I have known. Ashley will have a small body all of her life and this will give her caregivers the most gentle of ways to care for her. I have seen men in so large that it was difficult to care for them and I am sorry that this procedure isn't available to more families. I have a disability that I have had to compensate for all of my life and when I was a child it almost ruined my Mother's back, I have been fortunate that I had my disability corrected for the most part and through surgeries and rehab. I live as normal a life as I know. I don't know life another way and I am thankful that I get up and walk everyday Please accept my sincere respect for these things your family has done to give Ashley as normal a life as she will ever know. God Bless“ “It is so upsetting to hear the controversy about your beloved daughter. I know several people that have disabled children and know that it is not just difficult for the caregiver but also for the child to be moved and cared for as they grow to "normal" proportions. I am especially close to a family that recently experienced the death of the father. He was the major caregiver for his daughter who was a full grown adult. Even though she was on the small side, she was still more than most people could handle. As a result of her father's death, she had to be placed in a nursing home, a heartbreak for her mother. I think God approves of your decision to be able to hold, carry and caress your daughter. I applaud you for trying to prevent as much discomfort as possible for your child, for helping her to be able to experience a fuller life, and especially for making it possible for her to stay at home and be cared for by the people who love her most. May God bless your family.” “I just heard of Ashley on a news program this morning and just read the blog with all the information regarding the "Ashley Treatment" and the reasons you decided to care for your daughter in this manner. I just needed to add my support to the support of others in your decision to make Ashley's life as comfortable as possible. I was blessed with four healthy children who are all now grown but have had the pleasure to know many special children in my lifetime. Several I can think of would have been so much better off if this treatment had been available for them. I've seen families broken apart by the demands of caring for adult children who could not offer any help for themselves. I've watched families in the terrible process of having to put children in care facilities because home care became impossible. You are very blessed to have a loving supportive extended family as well as a strong nuclear family and Ashley is blessed to have parents like you. You have upheld Ashley's right to life in the best way possible for her. I am greatly touched by your devotion to giving your precious, beautiful daughter the best life she can have.” “To the Parents of Pillow Angel, Ashley, I have just read the article about the Ashley Treatment in People magazine, and I wish to show my support of your very difficult decision as I have a first hand insight as to the dilemmas you would face in the very near future had you not chosen this procedure. My mother-in-law lives in upstate New York and has custody of Vickie, a ward of the state, who is severely disabled with barely a brain stem. Vickie is now thirteen years old and is 5'8" weighing about 150 lbs. Vickie began menstruating at nine years old, and she must be stimulated to have bowel movements, etc. Eventhough the state provides many amenities to make the caregiving less taxing, it is extremely difficult for my mother-in-law to move her and the care she provides 24/7 is becoming more difficult for her because she is 65 and her health is failing. Don't get me wrong, she loves this child more than life itself and has raised Vickie from the time she was six months old. My point is that I wish this information had been available years ago...that there would have been someone before you to face this challenge and give others in your position this opportunity. I applaud your decision and your diligence in knowing what it will take to care for your daughter in the years to come. You have been blessed with a sweet spirit who is guaranteed a spot in heaven. I truly believe that these special children are sent to those who are capable of loving and deciding what is best for them, and that is your right. Shame on those who criticize you and feel they know what is ethical. These are people who will never know the challenges you face or walk in your shoes. They have no idea of the love you have for your daughter. I have no doubt that Ashley knows how blessed she is with you as her parents.“ “My heart aches when I read your story and both the supportive and non-supportive comments from people. Ashley is a lucky young lady. I know the heart wrenching times you must have gone through to make the very difficult decisions you have made, and I applaud you. I, too, had a profoundly disabled daughter. By reading your story, I think she was more disabled than Ashley but also very, very beautiful. She passed away at six years old. Even then, she was difficult to manage physically. I feel blessed that I was able to care for her at home. I did get some professional help with RN nursing care, but it is a tough, tough road. I would selfishly love to have her here now, but I know that if she had grown much more, I probably wouldn't have been able to care for her here at home. For some reason, the last thing I ever wanted to do was to place her in a facility. I do not condemn you for what you have done but instead praise you. You have not taken away Ashley's dignity but instead have insured for her your loving care at home and a dignified life with the people who love her. Someday I would love to meet you and Ashley. Bless you and your little Pillow Angel“ “Our hearts go out to you and your family. I am the father of a child (now 16) born with Spina Bifida. Whitley is paralized from the waist down. We were talking about your daughter and the treatment that you were giving Ashley. Unless you have carried, pushed or assisted any disabled person you have no right to judge your path. Whitley agrees with me that if she was much smaller the effort she would need to" get around "would be much easier. She weighs about 120 lbs and is 4'-11" tall. She is a handful to lift. God bless you and Ashley and keep up the good work for her, God is guiding you in a good direction.“ “I have read your account of Ashleys treatment with enormous emotion and intense admiration for you and your family. Ashley is a beautiful young girl. You are so lucky to have her. The pictures of her show the face of God! I commend you on your decision to have Ashley undergo this treatment. Many years ago I worked in a home for severly mentally handicapped children. Many of these children were fully grown yet bed ridden most of the time. They had the mentality of a baby. The ability to hold them and caress them lovingly or sing them lullabys while rocking them in a rocking chair on our laps was impossible for us caregivers due to their size. Yet they loved this sort of loving attention....after all they were babies! Having them bedridden with little physical loving contact from their caregivers further harshened their existence. I think the treatment that Ashley has received provides her with more opportunities for normality...an easy going stroll in her stroller, sitting on your laps in front of the TV ... the love that any baby ... and indeed human being needs. Continue to cherish your time with Ashley. Children like this were given to us as gifts from God. We need to be so grateful for such gifts. Ashley is a small piece of heaven on earth. Admiringly!“ “I have read so many of your testamonies and e-mails from other families and wanted to add my two cents worth. We, too, have a child (…, 5 1/2 yrs. old) who is severly disabled due to lack of oxygen/birth injury. He is tube fed, non-verbal, little to no voluntary movement, seizures, and so forth. Same as many families who have written in to you. Since this story, and for me the past 24 hours in particular, I have tried to figure out where to go with this in our situation. I have had many thoughts and all seem to go to the direction of "Ashely's treatment" for ALL of the same reasons as you. In the end it can ONLY benefit the child and the added bonus is the family benefits in SO many ways. Mostly the family gets to enjoy having the family together. As my son is getting bigger (just this week, I threw my back out!), we are finding ourselves separating as a family. Sometimes we find one of us has to stay behind with [him] while the other takes our 8 year old, healthy, vibrant daughter to activities that she shouldn't be withheld from doing because of her brother's limitations. I could go on, but you and so many other families on your blog have made all of these points over and over again. The only thing I would like to add, as I haven't seen this being reiterated as much as I'd like, is the size of the physical body corresponding with that of the age of the mental status. And as for socially accepting these children as they get older, I think is only POSITIVE. Right now, we get so many comments on how cute he is, the attention he draws from people in a social environment, that I don't see happening to older children or adults with severe disabilities, only them being shunned in the public eye. I have often worried about this and have tried to condition myself not to look ahead to those inevitable days. I know feel there is HOPE. Thank you for being so courageous to try something new and sharing it with the rest of us. I feel Ashley has proven her "purpose" in life, which not many, typically-developed people can even say! Love and prayers“ “I too am the mother of a profoundly retarded child.. Well she is 46 now and all the fear you have or had for your child I am living so I very much agree with you .. My little 5 pound daughter has grown into a over weight.. very big breasted woman that I can no longer lift. I had to give up lifting her 20 some reasons ago and only can get her home now if her adult brother is around in case I go down with her while I have her home for a week in . She is mentally about 6 mos.. does not walk... after years of surgery and therapy .. doesn't want to walk.. seems to have no interest. She had speech therapy too. Her father has passed a few years ago . She is like a baby.. has always been... I understand so much what you are going threw and I wish to tell you only someone like me can understand what you are truely going thru. I know you love her ,,,, I can tell my all your concerns. I have to go see my daughter in a home where sometimes is less than I like. Short on help and or some of the help leaves alot to be desired! Some times when you ask them questions about your child they give you off the wall answers or don't know. So you are doing the right thing.. the heck with what others think... My heart goes out to you both and to Ashley.“ “I am a mother of a 17 almost 18 year old daughter who got a bad DPT shot at 6 months and has never been normal since that moment in 1989. My daughter is now the most severe epileptic you will find. I signed a DNR 4 years ago. She has nursing care everyday when I can get it from 7a to 7p. Her father and I divorced because he wanted her to be put in a home and I said she has a home until I die and then her brother and sister have said they will make sure she is taken care of. NOONE has the right to tell you what to do for your pillow angel. My daughter weighs 160 lbs and is 5' 4". She is very hard to handle. If we even suspect for a minute that she is due for a seizure we cannot leave our home or her side. It takes 2 sometimes 3 to take care of her during a seizure. There are days when I know it would be easier if she was smaller. When her period started several years ago she could not handle it. She hid, was scared and made terrible messes. We had a wonderful pedi. and he put her on shots and she has not had one in over 4 years. I think I would lose my mind to have to handle that too. I have cried tears for you today because I know how terrible people can be. Until they are in your shoes they will never know how lucky your daughter is and how blessed you are to be chosen as her parents. Bless you and continued strength in your special walk with your angel.” “I have worked with severely disabled children in an institutional setting and I am sure you are receiving a lot of negative e-mails. If this gets read please know that I support your decision and know that whatever you can do for Ashley that will make her life more comfortable and that will enable her to be included in activities in any way is all good! I have dealt with 17 yr old girls that are in diapers and physically able to get around but with the mental capacity of an infant. Puberty and menstruation was a cruel twist of nature in a world that was already fraught with pain and confusion. Obviously we are not talking about a child with a degree of brain damage that could possibly be taught to dress and bath and communicate -- many people do not realize the degree of brain damage that you are dealing with. In short, please be encouraged by the thought that there are people like me that have some small idea of what you are dealing with and support your decision.” “My oldest daughter and I saw your story on TV, it moved the both of us because we too are a family with a disabled daughter. I am so sorry for all the bad comments people have said, but I believe you did the best thing for Ashley. My daughter's name is Ashlynn she is 20 months old and like Ashley, Ashlynn does not talk, walk or tell me where it hurts.(usually its a guessing game). Ashlynns future care is a daily descussion in our home. I stopped working and going to school and devoted my life to her. Ashlynn weighs 32 pounds and is 33 inches long, she is fed through a feeding tube and it is getting harder for me by the day to get her up and down our stairs, lift her, bathe her, get her inside and out of the car. I know exactly what you have gone through. NOBODY KNOWS EXCEPT THOSE WHO LIVE IT EVERYDAY. I hope that her smiles continue to give you strength and fill your hearts with love. My prayers will be with you always.” “I will keep this short...I know you're getting tons of email about this..but this is so amazing to me...I couldn't BELEIVE it when I saw it. It MADE ME CRY WITH GRATITUDE.. My son, Brenden, has just recently turned 7 years old. He has Nonketotic Hyperglycinemia. (NKH info website at http://www.nkh-network.org/) He is hyptonic and has a g-tube for feeding. He is my WONDERFUL PILLOW ANGEL (photo attached.) He is precious and special, but getting bigger all the time. I can barely lift him anymore. I applaud your love for your special child...I know exactly how you feel and Brenden is also such an incredibly important family member. It makes me cry to think that someday I may not be able to take care of him. The Ashley Treatment has given me hope that my son may be able to stay with me for as long as I live. THANK YOU. When you have a moment, could you please email me links to any info you can so I can bring up this type of treatment with Brenden's doctors??? If you have email links to the Doctors who assisted you in your decisions and treatments, can you give them out?? I appreciate ANY help you can give. As soon as possible, but I understand how busy you are.” “I am so very moved by your story. I have a 4 year old pillow angel; we are also in the Seattle area. We have no idea why Wyatt is this way and thought we were alone dealing with this mysterious condition. My husband and I are contemplating having other children (Wyatt is our first) but I am terrified. At the same time I am so sad that my son can’t hug me or tell me he loves me. I want the chance to have a typical child, but at the same time, I am scared that I won’t have enough energy to care for Wyatt or that I might be even sadder about Wyatt’s condition if I have another child. Wyatt is “perfectly healthy” in all other ways and I have often dreamed of keeping him little so I could hold him and cuddle with him, which seems to be his favorite thing. I am crying as I write this because I saw on your website that you have 2 typical children and you look like a happy family. That there might be hope for MY family? That there is someone else who understands what we are going through? I am overwhelmed. I wish you the very best. I know you have thousands of emails and I may not ever get a reply, but I’d love to hear from you, borrow from your strength, help you any way I can.” “Ashley is a beautiful little girl and I wanted to let you know that my husband Ron and I fully support what you are doing. We had our own pillow angel for nearly 12 years. Our sons have grown into gentle, compassionate men by having their sister in their lives. Like you, we tried to provide the best quality of life possible for her. As she grew physically bigger, it was a greater challenge to provide this quality. Although we had a lift van and wheelchair, getting her out in public was harder (just think pushing an adult sized heavy wheelchair through a snowy parking lot or carrying her across a sandy beach to a lounge chair at the waters edge). Also, picking her up and dancing around the room with her throughout the day went from every 30 minutes or so to once or twice a day just due to her size. As you say, concern about developing pressure sores became more of a reality although she never had one except when she was hospitalized. We ended up having some great caregiver help which was appreciated for dressing and bathing but they still imposed on our family privacy. There was also a difference in the comfort level of our home- some caregivers stole, even from our sons, and thus we always had to be diligent about where we put down our wallets. When Rachel died at 11 years, 10 months, her neurologist said it was likely due to several factors, probably the hormonal changes impacting her brain as she entered adolescence. Please continue to stand unwavering, knowing that there are many parents behind you. We never had heard of, nor considered the option for our daughter but we would be doing it right beside you now if we could.” “Our family was also blessed with a 'Pillow Angel' child, Wayne. The stories between Ashley and Wayne are very similar with the exception that you had the opportunity to take medical action that we fully support. I would like to share a brief story below with you as when I think of Wayne and Ashley, I come to the same conclusion, they continue to thrive because of love of their parents and extended family. Wayne was my cousin, he was born in the late 1930's. My aunt was very small and there were complications in the delivery which created Wayne to have further disabilities than Ashley. With that being said, my uncle could not handle it (I never met him) and my aunt, grandparents, and my parents supported the care of Wayne. In the 1950's, my aunt met and married a wonderful man, Kenny; 'he' was my uncle. Kenny adopted Wayne and gave similar love and attention to Wayne. Bottom line, Wayne lived to be 61 years old! It is a true story of unconditional love! During the last 20 years, or so, of Wayne's life, his body and weight continued to grow. Exactly what you concerns were with Ashley did occur. Although my aunt and uncle took care of Wayne until his death, ventures out of his bed were extremely limited (hospital visits) and his care became more difficult due to his size and weight. Although Wayne could not talk, there were ways that he communicated as Ashley appears to do. I know, and firmly believe, Wayne knew he was loved dearly. He was my aunt's 'precious child'. In so many ways, the entire experience has made me a better, and kinder, person. My family, and I, fully support your decisions. Our love and prayers are with you.” “I feel very strongly that you are doing the right thing – not just morally, but as care providers. My sister died last year at the age of 38. She was mentally retarded all her life. Julie lived a rich life because she had a loving family - the same family that had to watch over her as she had the intelligence level of a four year old. It is almost impossible to explain to other families what this kind of care means if one has never experienced it. I read your explanation very carefully and can only feel a strong sense of connection. Julie was also very small – all her life she was tiny. However, she did mature and put on weight. As my mother grew older, Julie’s maturation and weight worried her. Julie talked and acted like a four year old, but she also appeared to be a very friendly tiny girl with large breast and hormones that confused her. Julie had a number of care providers, but all worried that she could become victim of someone’s abnormal desires and her inability to understand sexually. As care providers, my heart and mind goes out to you. I also thank you for attracting attention for those families who have it so hard when it comes to loving their children – no matter what.” “My best wishes to the sensitive, brave and intelligent parents of Ashley to have gone beyond the norm to provide the best care they themselves can provide to their pillow angel! Kudos! Great!!! I can totally relate to your situation as I have 2 little Pillow Angels of my own,12 years old. I have expressed and discussed the possibility of similar treatments for my daughter before but was given the legal and ethical excuse saying that it was not optional. Your experience has given me the strength to revisit the situation with the Doctors. Thanks a lot and you have infinitely given hope to many parents and tons of comfort to so many pillow angels. I am so sorry to see that people have now become so thoughtless and illogical that they see bad intention in everything...if these people were really concerned and had done something about it,we would not have the horror stories of abuse and total neglect of human beings who cannot take care of themselves. I do not want my children to become a statistic and will do everything to keep them with me till God wants to take them in his arms from mine. I am very fortunate to have tremendous support from my family and very caring additional support so that I can continue caring for both my Twin Pillow Angels but the issues of weight and height do impede the quality of care we can provide the children even with best intentions. As you mentioned the decision for the procedures was easy and I can see how I would too do it in a matter of seconds because I can see the pain of the child in her eyes even though she cannot verbalize it or has not reached the point where she will start crying. ( my children have a high threshold of pain recognition so unless it reaches beyond their tolerence level you cannot get a reaction!) I know what happiness they get when I can hold them in my arms and you should just ignore all these "ethicists in words only"....I have read this whole 'Man should not play God' when In-Vitro Fertilization was introduced...today it is a common procedure nobody even bothers to think twice about! I have not seen such a response even against Dangerous and totally Frivolous Cosmetic Surgeries - they are totally legal and ethical - Don't We play God in those cases? What ethical or moral standpoint can these so called God Fearing souls give to them? Haven't we got Breast implants reapproved by FDA again? It is so disgusting to see people being Hypocrites! All in all I empathize with you as these hurting comments will affect you and you family..I will pray everyday for your healing and ask God to give everyone the strength he has bestowed on you to do GOOD! You are very courageous to have opened the doors, knowing what was coming! Keep the Supporting and Soothing words in your heart and Ashley's smiles are all worth it! Love from Mother of Two Pillow Angels “ “My aunt and uncle raised and cared for a severely retarded woman, my cousin, for decades until their death. It was difficult for them to manage my cousin, who was able only to walk a few short steps at a time and was a full grown and somewhat overweight woman. They would not put her in a nursing home or other care facility because that was not their way. She is in a care facility now, as her parents are dead. My point is that caring for someone at home is difficult enough but it gets tougher as one gets older. So, if these parents want to make it easier for them and their daughter, bless them! They sound like loving parents and deserve all the support they can get.” “I just read the article in People magazine - and I felt very compelled to contact you and wish you well. I have worked with developmentally infants, children and adults for over 25 years. These beautiful individuals were placed in long term care, partially because of the times (just put him in a home, you can have more healthy children), partially due to families not able to care for their loved one, and finally, because the "child" grew too big for their now older parents to care for. There is just not enough financial, community, governmental support to allow all of these individuals to stay home. As I said, I have been involved with this population for a quarter of a century. The population I served was severe and profound, many like "Ashley". As I watched these beautiful babies grow into children, I got to know them as individuals with different personalities. As I watched them grow from children to adolescents and adults, I wondered "of all of the physical and mental attributes these individual lack, why God, was their reproductive system left intact?" The females, once they reach puberty have to suffer not only the monthly discomfort, including PMS. If they reside in a long term care facility in Illinois, the State pushes for them all to get gynecological exams and mammograms, even though statistically, unless there is a familial history of breast or productive organ cancer, these individuals are at extremely low risk for cancer. Also, they receive regular breast exams by a physician at least once a year. At best these tests are uncomfortable, and those of us not developmentally disabled can understand the procedure, why it is done, and what to expect. The DD woman has to be held down, physically restrained, to complete the procedure. No one could tell them why this is being done to their body...or prepare them emotionally for what is about to take place. Sometimes, the individually is strong enough, scared enough, or "non-compliant" enough to require a sedative for these procedures to be done. Besides the monthly discomfort, there is the subject of feminine hygiene. Many of these women are incontinent and rely on others for their hygiene needs. I come from a city that recently reported a pregnancy at a local long term care facility for children and adults. That pregnancy was a result of a sexual assault by an employee. The pregnancy wasn't recognized until she was six months along. She couldn't tell anyone, no one noticed and she eventually finished the pregnancy, caesarian delivery and due to her level of disability, has no idea she has a daughter. I have also seen many, many devoted parents, place their previously cared for at home children, before they "grow to big, and heavy" for their parents to care for at home. Lets face it, by the time our children are adults, we as parents are no longer young. We may have health problems, etc. that interfere with our ability to pick up, roll, diaper, dress, and bathe a 100 or 150 pound individual. Although your decision is controversial, and not for every DD person, I applaud your stand to give "Ashley" the quality of life she deserves. My very best wishes to you and your family” |
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