Updates on Ashley's Story
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.”
December 31st , 2007 (first anniversary)
October 12th , 2007
We are deeply shocked and saddened to learn of the sudden death of Doctor Daniel Gunther on September 30th. 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 related gems emailed to firstname.lastname@example.org:
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.”
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:
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.
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:
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 this sampling, 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 email@example.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: