The Ashley Treatment by jolinmilioncherie

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									The "Ashley Treatment"
Towards a Better Quality of Life for “Pillow Angels”

Update to members of the media and other visitors – January 7th, 2007 at 11pm PST:

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:
 Has topped the Health section of Google News for several days – there have been more than
400 articles worldwide
Prompted more than 1.6 million hits so far – more than a million in the first 48 hours
Generated more than 2,500 private emails – more than 1,500 in the first 48 hours

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:
Ashley is doing well and is healthy, happy, and lovingly cared for.
The "Ashley Treatment" is intended to improve our daughter's quality of life.
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.
We wrote the article and published this web site to inform and help other families of Pillow
Angels who might benefit from our experience.
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.
Please make sure to read the five emphasized paragraphs in the first two sections below, since
they convey the essence of Ashley's story.

To members of the press and media we hereby grant permission to use Ashley's photos and to
quote from our material as long as you clearly give credit to and include a link to this web
site: http://ashleytreatment.spaces.live.com/blog.

Since we’ve found so many blogs discussing Ashley’s story we’ve decided to disable this site
from public comments and dedicate it to focused material.
We will keep this bulletin updated with any new developments and highlights.

[Added on January 9th at 6:30 am PST] 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 .

Some wondered why we disabled the open comments on this blog in lieu of private email to
PillowAngel@hotmail.com. The reason is that we do not have the time to moderate an open
discussion and we wanted to focus our visitor’s time on informative messaging; the hundreds
of messages that were posted were thin on that. We will review the private email, organize it,
and post it (or not) as appropriate. We welcome thoughtful response. We believe that a
prerequisite for such response and critique is a thorough and careful read of our article. We
strongly believe in free speech and respect people’s rights to express their opinions: there are
dozens of other blogs for that.

We wish you all the best as we are sure you wish us the best as we care for our three dear and
well-loved children.

Towards a Better Quality of Life for “Pillow Angels”

Last updated: January 7th, 2007


By Ashley’s Mom and Dad




PillowAngel@hotmail.com
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 huddled 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
and mental developmental ability since about three months of age.
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. 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 more dignified than a fully
grown female body.

We call it “Ashley Treatment” because:

1-    As far as we know Ashley is the first child to receive this treatment,

2-    We wanted a name that is easy to remember and search for,

3- The name applies to a collection of procedures that together have the purpose of
improving Ashley’s quality of life and well-being. Growth attenuation is only one aspect of
the treatment.
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:

1-    Limiting final height using high-dose estrogen therapy.

2-    Avoiding menstruation and cramps by removing the uterus (hysterectomy).

3-    Limiting growth of the breasts by removing the early breast buds.

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 could 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 most seem to think4. It
was obvious 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. 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’ve just
completed this treatment after two and a half years. During this whole period, we have
observed no adverse consequences.

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 change every three days. Estrogen advances bone age until separate growth plates in the
bones fuse together, see photos, halting growth and determining the extent of height. This
occurs in both boys and girls.

Dr. Gunther sees Ashley every three months to monitor:

-      Weight and height

-      Bone age, by comparing her hand X-ray to a set of reference photos

-      Estrogen level, and other tests, through blood work

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.

Furthermore, Ashley remaining child sized has other practical ramifications such as:

1- She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t
sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop
fitting in a standard size bathtub and would need a different arrangement for bathing.

2- Ashley is more comfortable lying down and does not like to sit in her wheelchair, she
fusses and cries if she is in it for more than a short time. We move her around the house while
lying down in a regular double-stroller (we face the chairs together, cover them with a thick
double natural sheepskin and set the back of one to a reclining angle). The system works
remarkably well; however, Ashley is already at the weight limit for which this stroller is
designed (two babies).

Recently, 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:

1- Skin sores: larger body weight leads to pressure skin ulceration or bed sores, providing
an inlet for deadly bacterial infections (another way to look at this is that adults are more
susceptible to bed sores than children).

2- Pneumonia: increased body weight increases the pressure on the chest and reduces the
lungs’ ability to expand, causing fluid build up in the lungs that increases the chance for
pneumonia and breathing complications.

3- Bladder infection: similarly, increased body weight causes increased pressure on the
bladder outlet, resulting in urinary retention and an increased risk for bladder infections.
These points make intuitive sense and so we decided to mention them; however, at this point
we do not know of a study to reference that provides us with an objective and quantitative
understanding of these benefits.

Avoiding Menstrual Discomfort through a Hysterectomy

Ashley has no need for her uterus since she will not be bearing children. This procedure will
avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly
associated with it.

The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her
natural hormones.

Additional and incidental benefits 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; for example,
an aunt had a breast reduction operation at age 19. 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).

The breast bud removal has other benefits:

1- Avoiding the possibility of painful fibrocystic growth and future related surgeries.
Women in Ashley’s lineage have a history of fibrocystic growth.

2-   Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

3-   Large breasts could “sexualize” Ashley towards her caregiver, especially when they are
touched while she is being moved or handled, inviting the possibility of abuse.

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 (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
supportive comments below. 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 (limb amputations or 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 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. 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. 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 treatment.

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 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”

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 below. 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.

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 the right door.

We thank Margaret Russell for her tireless support in reviewing and editing many versions of
this article, which helped improve it significantly. We thank our family and friends for their
love and support throughout the Ashley story.

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] According to the health section of Google News there are more than 400 articles about
Ashley’s story worldwide as of January 5th.
[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.
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Supporting Opinions

Supporting Opinions

These opinions are mostly from private mail to PillowAngel@hotmail.com. They share real
life experiences that support nearly 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.

“Ashley's parents have made a terrifically difficult decision to do what is best for their child,
but their true act of heroism is sharing it with the world, putting up with the slings and arrows
of those that will never walk in their shoes, to help the few that will.”

“Ashley sounds like a true angel. We will also benefit from your decision. Instead of being
stuck in bed most of the time, Ashley will be out in the world in her stroller, sharing her love
and radiance among all. Thank you for sharing your angel with us!”

“Thank goodness for modern science! Thank goodness for parents that put mind and spirit
over body. Thank goodness for parents willing to open and share this private ordeal so others
can choose for themselves.”

“At first blush the Ashley Treatment seems extreme -- but really, aren't a few days or even
weeks of post-op discomfort worth it for decades of a vastly improved quality of life?”

“You have in my eyes made your daughter's life much better and given her the potential for a
much brighter future. I think the Good Lord was very wise in choosing you for Ashley's
parents. You are shining examples of Parents whose love for their child transcends the fear of
how our "society" might judge them. I feel lucky to have found your story, your strength and
love has touched me. And after seeing your beautiful daughter's pictures I know where
much of your strength and love comes from... it shines brightly in her eyes. I really think
your household is blessed with more than one angel.”

“god has blessed ashley, by having her born to such loving parents. She is a lot luckier than
many of the disabled in this country. Your decision could not have been easy and as a nurse i
know many of the caretaking issues you face day in and day out. God bless you.”

“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.”

“You were faced with a nightmarishly difficult dilemma, and faced it with great courage,
creativity, and love. I can't tell you how much I admire you. I am a 53 year old woman who
never had children. Reason: I lack courage. I will keep all of you in my prayers.”
“My own opinion is that they had already medically intervened when they inserted a feeding
tube. The "natural" state for this girl would be dead, since she can't even swallow the nutrition
her body needs to stay alive. Intervening to make her more comfortable and make it easier for
her care givers to give the highest level of care does not seem out of line with the original
decision to intervene in the course of nature to keep her alive.”

“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 am the parent of a son who was seriously brain-damaged due to an accident at birth in 1980
- he died when he was six months old, three months after we were told that his brain was
essentially destroyed. He was profoundly deaf, completely blind, and had no suck or swallow
reflex, so had to be fed from a tube in his stomach, and we were told he would probably not
survive early childhood. Had he lived, he would most probably have been well over six feet
tall. I can not imagine how much discomfort he would have been in had he reached
adulthood, nor how difficult it would have been to care for him because he had no control
over any part of his body. I am so glad that your family had options available for Ashley, and
physicians who were willing to work with you to ultimately improve her quality of life. God
bless all of you!”

“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 read with compassionate understanding Ashley’s “frozen-in-time” story (C/M 6/1), and the
outcry from do-gooders and rights activists is not surprising. It is apparently all right to have
“designer” babies, to have IVF when well past child-bearing age – but it’s not all right for a
family to maximize a quality of life for a profoundly disabled child – if it conflicts with
“rights”

Do any of these activists actually know what it is like for family carers to turn their home into
a work-site, to care 24/7 – for the life of the child, and live the impact of that on their lives,
and the lives of siblings - for the rest of their lives?

Invariably the answer is “no”.

More power to Ashley’s parents, whose motivation is love.

It’s about time these activists introduced both responsibility and reality into their “rights”
debate.”

“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.”

“Just to say I have been deeply touched by your devotion to your daughter. You have my
strong support. Whatever people say I believe you have acted as responsible loving parents.
Ashley is very special to God as are all of your family. He would not intend for her to be in
lifelong discomfort and has provided the medical expertise that she needed. I pray that God
blesses you all and that you may be an inspiration to others.”

“I am a social worker in the field of child protective services. I think this child looks, in the
pictures, like a happy girl. Anything that allows her to live in such a supportive and inclusive
family should be done. This is a brilliant idea, I don't know why it hasn't been thought of
before. This child is thriving to the best of her abilities. I have been taught by many foster
parents that a hopeless case is in the eye of the beholder, many people have taken children
with severe problems and they have gone far beyond the doctor's predictions!!!”

“Just a note to say my thoughts and prayers are with you, along with my families. More
people throw away their loved ones in institutions and let other people handle their problems,
but you have steadfastly made a decision to love and care for your child. You are an
inspiration, and I wish the Lord walk with you!”

“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.”

“Bless you for wanting to care for your little pillow angel. I am a special educator and have
worked with young children and young adults who are to big to be move around. To often
these children are sent to institutions because they have become to large for the average parent
to move and care for. Your choice is only a choice that you should make.

No one should criticize such loving parents who only want to do what is best for your child.
God Bless you. You are giving your little angel a wonderful life considering her disibilities.
Chin up and don't let the negative comments bring you down. You have done the best thing
for all concerned.”

“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.”

“May God Bless You... and your family for taking such good care of Ashley. If all parent's
were as thoughtful, caring and responsible as you, there would be far less need for foster care.
My prayers are with you all. Your Christmas card shows your love for your whole family and
was very touching.”

“I had just finished watching the "Nancy Grace" show (with her usual opinions which I rarely
agree with) and wanted to know more about why she, and her guest Mr. Long, seemed so
disturbed with tonights topic. What did they research and have access to that I did not, or was
not, aware of? I checked out your blog (the first blog I have ever tried to look up...due to
limited computer skills). I commend you, salute you, bless you from my entire heart, and
lastly, as strangely as this may seem...almost envy you. Yes, you read right...envy. Your
spiritual strength, the God you know and understand, the love in your family, your unselfish
thoughts and actions, your willingness, priorities and purpose in life...so many things that I
could continue to mention. Your other children will witness unconditional, endless love that
you extend, and will continue to extend, to not only Ashley, but to them as well, and all of
God's children (no matter what the age) whose lives you touch.

As mentioned, your experience and the sharing of it, will change my life. I know this. I have
no children...and have never had a husband or anything that resembled a partner with a
common purpose or view on life (at the current age of 47) and I was feeling lonely and self
pitying. With some inspiration as you have provided...I wish to embrace what I do have in
my life (siblings) and refocus on love.

Thank you.”

“I am a school nurse in Southern California, who has worked as an R.N. with children in the
hospital (Pediatrics, Neonatal ICU) and public schools (as a school nurse and Health Services
Coordinator) for over 25 years. My daughter is a senior at San Diego State University, and
sent your story & blog to me....I have never felt so compelled to write a letter to parents of a
child with special needs as I do now.

Thank you. For your inspiration, your love of Ashley, your courage to be ground-breakers in
special needs child care, and your willingness to share your personal story with many others. I
work with students from ages 3 years to 15 years whose lives and safety (and comfort) are
negatively affected by their maturing bodies...when they themselves have mental and physical
debilitations so severe (from cerebral palsy, osteogenesis imperfecta, etc) that my heart breaks
for them...even while I must continue to organize and implement their daily care in the public
school setting.

Please know that Ashley & your family have inspired me and I will share your story with
many other school nurses and families!”

“Being a parent is not for the faint of heart, the hopeless, or the deficient in courage and
wisdom. We do the best we can with what we have within our reach today. Having two of my
own I can understand the choices you've made for your family. God bless you.”

“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.”

“Hey dear Ashley's mom & dad, & you littlle angle Ashley too . :)

I know you are used to reading thousands of mail regarding Ashley, but I just couldn't stop
mailing you.

This is Ipshita from Bangladesh.

I respect you from the bottom of my heart & sallute you for your decision. It was oviously
very tough to go ahead with Ashley treatment,.

Afterall, which perent in this universe would like to snatch the beautiful feeling 'being a
mother'from her child,??but when reality strikes, sometimes you gotta do what you got to
do!!!, When I look at the big picture, ya, you did the perect thing which you could do for
Ashley to have a better life.

Just wanna share a story I read in newspaper one year ago.........

It was in India,our neighbour country. In a distant village in India( I don't remember the name
) , a girl named laksmii was mentaly disabled, she could'nt move a single step, her deasese
intencified as she grew old & at the age of 21 she was completly mentally disabled & as her
brain disfunctioned, her body did'nt react. So she was a living dead. Then her perents urged
the government to kill her so that she could rest in peace, there was huge debate with this
issue, but finally they permitted.

I wonder how painfull was it for her perents to take such a drastic step. IF, If they had
ASHLEY treatment, may be Laksmi could have lived long.

Dear perents, you took a big step that will show others a road to follow. & I wish no other
pillow angles have to die like Laksmii but live like Ashley,

Happilyy live like ashley, rendering smiles to millions & giving a reason to live for others.

I wish I could meet Ashley personally, but my wishes and prayer are always with her.

Regards,”

“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.”

“Isn't it such a shame that people feel they have the right to trumpet their opinion without
being fully in possession of the facts. A sad indictment of today's judgemental, accusatory
society. …

To Ashley's mum & dad: Congratulations on your strength, courage and bravery. Sorry for the
rant, but there are so many people out there shouting without a clue of what they speak. I have
just spent the last three years nursing my 9-12 year old son through leukaemia and although
my nightmare is over, I have nothing but praise for you and your decisions as during his
treatment, he faced death's door several times and was dragged back by conscientious,
dedicated medical staff. If there was anything I could have done at those times I would have
done it. In order to ease his pain at one stage I OKed the removal of a spoonful of flesh from
his lower back and another from his thigh. I also consented to injecting him with potentially
fatal drugs in the hope that it would save his life. As a parent, you have to make those
decisions - and you have that right!. Its alright for the blogging cognescenti to jump up and
down and say how sick you are to prevent Ashley from having children, but they obviously
have no idea how hard you must have thought about it and the hours you spent at night talking
about your choices. (Ignorance is bliss!)

We can all see that you are intelligent, well informed people who are more concerned about
your daughter's welfare than the obfuscated opinions of others. Moreover, I note that although
you may be a religious family, you haven't tied yourselves up in the sentimental aspect of
faith. All credit to you. God may love us all, but he doesn't interfere in our lives - does he?

Keep loving and caring for Ashley. Her eyes say everything.”

“I just read your blog about your beloved daughter, Ashley, and her special situation. What I
took away from your story is the tremendous love you have for Ashley, as well as your other
children, and the happy family life you have together. I believe God knew what he was doing
when he blessed you with Ashley, and a blessing she most certainly is to all of you! I don't
really understand the controversy as your decision to go forward with the treatment is
obviously in her best interest. It is so obvious that no one could offer her everything she
needs but you all, and the treatment will allow you to care for her the rest of your lives. I feel
blessed to know your story and to realize your intense love & devotion to your family, and
especially Ashley. I wish each of you much happiness and peace as you continue on your
journey as a family.”
“Thank you for caring enough to find new solutions to old problems and for being willing to
share your ideas with others. Our world needs more people like you. I have been a nurse for
38 years and believe deeply that you are on the right track. Your daughter is lucky to be in
your care.”

“I am a 65 year old father and grandfather. Some of our family have been diagnosed with
autism, very severe retardation etc. I have known and been involved with treatment, education
and development quite fully since 1964.

I can understand your calling your loving child ‘pillow angel’ because that is exactly what I
feel she is and your love for her and her responding love, comes through very clearly, not only
in the lines but also between the lines, as you write about her.

Medical science offers us ways to achieve our ends of expressing that love, and you have
accepted the best opportunity available, and I am confident that Ashley will accept and
respond to that procedure in such a way as to allow that love to grow as our God wills it.

This will not stunt her growth - this will help to facilitate your and her love to grow, and
remove many of the possible difficulties that would otherwise reduce the amount of energy
that is available for relating to each other (especially those energies associated with direction
towards even the tiniest developments in right and wholesome directions).

Your story has been heartwarming and gives reassurance; that we are living in a wonderful
day and age and that we have been brought a long way from the mistreatment that was so
prevalent 60 and more years ago.

It seems obvious to me that God’s Love prevails in your relationship with your child and that
you are sharing that love and emitting it’s light for many, many people with open hearts, to
feel it’s warmth and understand the rewards of accepting the challenge of such a delicate
decision.”

“There really are angels on earth, and they are not always the kind with wings. The are
people like you!!

My husband and I adopted two special needs children back in 2000. We were told they had
no disabilities, just our daughter had mild epilepsy.

Our daughter is now terminal. We have already been through so much, including bankruptcy,
in taking care of these children. Annie has a IQ in the low teens, she continues to regress, and
the more her body matures, the more she seizes, which decreases her life expectancy.

We applaude you both and your decision. If you don't do anything else, make sure that other
parents have the same right to these types of decisions as you did. PLEASE!!! I live in
Florida and would give any support necessary to be sure no one out there who "has no clue"
will take this information and do something dreadful by taking indvidual decisions and rights
away. We have already had to fight in the decision on how we will allow our daughter to die.
We had to deal with outsider opinions and a full ethics committee and a state multi-agency
meeting where someone had turned me, Mom, in for attempting to kill my child. Just like
you, We strongly feel that unless you live this life, you have no clue.
We are extremely loving, caring and very self-sacrificing parents. We have and always will
want the best for our children. After everything that I have read concerning your situation, I
am sure there is a wonderful castle waiting for you all up in heaven. Our daughter has gained
alot of weight over the last year, and has grown alot bigger. We can no longer hold her, carry
her around, caudle her, or easily move her around. Her nurses have had to almost hurt
themselves just to assist her onto a potty chair. I wish I had been given the information that
you've had before. I would have desired the same thing. Annie loves to be held. And
menstrual cycles increase her seizure activity. Which also decreases her life span.

Thank you, Thank you, Thank you!!!!!!!!!

God Bless your family, one day, God willing, a long, long time from now, our daughters will
meet in Heaven. They will run and jump, climb trees, play and talk, talk, talk. They will do
anything and everything they want!”

“Dear Ones,

I have just read the story of your Ashley Journey, and am touched deeply.

We were likewise blessed to have our very own "Pillow Angel." Her name was Melanie, and
she was indeed an angel among us. In her face we came to see the virtual Face of God, and to
be in her presence was bliss for many people.

Our Melanie passed away five years ago at age 37......truly amazing, as she had never been
expected to live at all. We, as you, truly treasured every moment we were given to have this
treasure among us.

She, too, was our first born, and our other 3 children adored her as we her parents did. They
grew to have an uncanny ability to view "the bigger picture" of our world and our universe,
and to appreciate the seemingly tiny things in life as well.

This Christmas our 8-year-old granddaughter, Tess, wrote as one of her requests to Santa
Claus, "Please let me have Mellie back to play with for a little while." Tess was only 3 when
her cousin passed away, but it is apparent that those memories remain potent and beautiful to
her. I am sure that her Santa request is filled even now, as her memories of Mellie, who was
never really able to "play with her" at all, are what she shall have close in her heart always.

It is also apparent from the faces of those surrounding your Ashley that you feel the
inexplicable joy and beauty that your precious one bears for all of you.

Thank you for enlightening your world, Ashley dear, and for sharing your radiance with all of
us.

With heartfelt love, Mary”

“Thank you for standing up for YOUR daughter. I am so happy all the treatments and surgery
were done BEFORE the crazy media got involved in the decisions YOU made for YOUR
child. It is so very obvious that they were for her betterment. At least you didn’t have to go to
an open courtroom to try to assist your own child. Glad the ethics committee agreed with you.
(those were the ones that needed to assist in making the decision…not the crazy media)
Bless you for your love for Ashley, my prayers to her and you.”

“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.”

“hi Ashley. how are you doing today. i was passing by & decided to make a stop and look at
this lovely web site. nice pictures. wonderful familly. i read the whole thing & i just want to
say that ashley has the best parents in the world. parents who care & know what's best for
their daughter future life. good luck.

i'm a muslim but i will pray to god that one day ashleay will gain her streinght & walk. god
bless her.”

“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.”

“I have been a special ed. teacher for 15 years and the mother of a special needs child. What
you are doing for your daughter takes great courage and I applaud you for it. It is so easy for
those who do not have a clue as to what you are going through to make judgments. As I
teacher I see so many kids labeled severely and profoundly challenged that grow up
physically but not mentally. How much better their lives would have been if they had stayed
anywhere close to their intellectual age! Because of your tough and courageous choice,
Ashley will live a better life. The idea that this sets a bad example for others is silly. You did
not make these decisions in your own best interests, you made them for hers. That is what
parents, all of us, are supposed to do. You can't be concerned because someone, somewhere
may make a bad decision based on information from Ashley. That is not fair - especially to
Ashley. May your Pillow Angel continue to be happy and bring you joy for many years to
come.”

								
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