And then they went on to do even further things to stunt her growth. There are so many things wrong with this story, I don't even know where to begin.

"cannot walk, talk or hold her head up. She is fed through a tube and lies wherever she is put, usually on a pillow" yet the parents say she is "happy"...

Honestly, though my instincts are to lash out at what was done to this child, I'm just going to withhold all judgement. I can not imagine dealing with such a tragic situation. But, I surely see little quality of life for this child. Perhaps she responds to touch and love. I hope so. And, despite their decision, I'm not prepared to assume these parents have anything but love for this child.

May someone, someday find a reason for this phenomenon--static encephalopathy. How sad....

How true, how true. The similar situation I am familiar with lasted 26 years, and the child never progressed beyond about 9 months. Although there are plenty of people who will tell you what to do, never will they actually lift a finger to make it possible. Their advice, based on what a normal child should experience, is worthless hot air.
And it's not a horrific situation. It's the hand that nature deals out sometimes.

A child who will tragically never be able to think for themselves, to move on their own, to respond in any way, nor to have any control over their destiny--or even their own bodily functions? I have great sympathy all the way around and there is no way I would ever try to judge the parent's decision in this situation. But not horrific? Ok. But, I doubt in the parent's most brutally honest and private moments, that they would totally agree.

The situation is what it is. If you fall into thinking of it as horrific, you start second guessing. Should the child have had that surgery at birth that allowed it to live instead of die in a few days? Should you have let nature take its course the first time the child got sick? The second time? The third time? Which is less horrific, passive acceptance or medical intervention? Children like these have so many multiple things going wrong in them that their life expectancy is short, but you never know how short.

You may not understand it clearly if you think they can't "respond in any way". Even if they can't walk, talk, eat, or control their bodily functions, they still have individual personalities and can laugh when they are happy, cry when they are sad or in pain, and experience the world with the senses that are functioning. As long as they are aware, you treat them just like other human beings with respect and belonging. When they lose that awareness, when they lapse into a Terry Schivo state, then you can pull the plug.

having worked with the developmentally disabled for 32 yrs., I can say the situation my not be as "horrific" as you state. While this child may not communicate the way everyone else does, I bet she does communicate in her own way and those familiar with her understand. No matter how handicapped an individual is they know what love is and I would bet she recieves an abundance from her parents and siblings. I don't know Ashley but I'm sure there are things she enjoys and reacts positively to stimulate her senses such as music or being outside with the wind blowing across her face. Her siblings are probably learning there own life lessons too, such as compassion and to help others in needs.

Every life has meaning and I've learned many things from the folks I've had the pleasure of working with. I've seen too many people who were abandoned by their families and thrown into institutions. Sounds like Ashely has a great family that are making decisions in her best interests and taking good care of her in her own home where she belongs. If you look at this positively she is a lucky girl surrounded by love.

Ashley looks healthy and happy. There are two other children in the household, who also look healthy and happy. If what the parents have done helps Ashley live a happy life, as it seems to be, then I don't have a problem with this. They will be taking care of her for the rest of their and her life. Why not help her and them have a quality life with their daughter?

I'll hold off the internet outrage, second guessing and remote diagnosis: She's been dealt a crappy hand in life, and will never run for president, win a decathlon or write a great piece of literature. But hell, neither will I.

She looks happy. I reckon that's enough.

What they did is an insult to the dignity of everyone with a disability.

It is simply not fair or logical to lump "everyone with a disability" into the same bracket like that; in fact I would go as far as to say that merely doing so is more of an insult to people with disabilities than anything these parents have done! People with disabilities are not some homogeneous group who should be treated exactly the same way - to do so would be unfair and cruel for many individuals (it would be neglectful to treat people who have extreme disabilities that render them utterly dependant on others in exactly the same way as people who are relatively independent, and it would be unfair & patronising to treat more independent disabled people the same as people who cannot think for themselves). People with disabilities deserve to be treated as individuals, just like everyone else, and this means everyone's needs should be assessed on an individual, case-by-case basis, according to the unique combinations of challenges & strengths they possess, and their personal circumstances. What is right for one disabled person might be totally wrong for another. It goes without saying that the treatment being given to this girl would be utterly ridiculous and morally abhorrent if it were applied across the board to all people with disabilities, but that doesn't make it wrong for this girl, and perhaps some others facing similar circumstances. There is a profound difference between someone with a disability that makes their life more challenging but is basically able to function, think, make decisions for themselves, etc, and the kind of disability this girl suffers from. She has the mind of a baby, is unable to move, and has no hope of ever progressing beyond this point. She will never be able to do anything for herself, she will never be able to think for herself, she will never be able to comprehend the changes that happen to her in puberty, and she will never have any quality of life beyond what her parents are able to provide for her. She will always be utterly dependent on others.

These parents are not doing this because they can't stand the idea of their "little angel" growing up, they are not doing it to merely make their own lives easier, they are doing it because they genuinely believe it will make it possible to continue to provide their daughter with some kind of acceptable quality of life, and will protect her from the distress of having to deal with adult problems that her mind is completely incapable of coping with (as a woman I can tell you that the monthly hormonal cycle is hard enough for those of us with the mental capacity to understand what is happening to our bodies, for someone with the mind of a baby it is likely to be far more distressing). Keeping her more physically easy to deal with is not a matter of selfishness on the part of the parents, it really does make a difference for the girl's quality of life - anyone who has to care for a totally dependant and completely physically & mentally incapacitated adult will tell you that there are some things it is almost impossible to do due to sheer physical limitations. Picking up a fully grown adult who is unable to cooperate safely is just not feasible for most people, and as her parents become more elderly even adjusting her position in the bed or moving her around to clean her would be impossible for them. Even with expensive hoists and other equipment, there are still some things you just can't do with a fully grown adult that you can do with a child. At the moment they can take her out regularly with the rest of the family to give her fresh air, new experiences, and a more fulfilling family life, they can move her from one room to another to give her a change of scene and allow her to be more involved with what is going on in the household, they can keep her clean and comfortable without it being a major undertaking involving several people or fancy, impersonal equipment, and perhaps most importantly of all, her parents can pick her up and give her a cuddle. Being able to pick her up and hug her sounds like such a trivial thing, but anyone who has cared for a young baby or a profoundly disabled person can tell you that this is one of the most important kinds of care you can provide. If this girl is forced to depend entirely on hoists and other machinery in order to be able to move around, rather than the loving arms of her parents, it will inevitably lead to greater distress & discomfort for her. Her quality of life will become worse and worse as she grows up, no matter how hard the parents try to provide the best possible care for her, and as her parents age and become less physically able themselves she will have to depend more on strangers or even be placed in institutional care. These parents also have other children to care for whose needs have to be considered; the more demanding the care of this little girl becomes, the less they will be able to give their other children. I would imagine that these parents already have to work incredibly hard to provide a good family life for all of their children - they certainly couldn't be accused of laziness in wanting to ensure that this doesn't become even more difficult!

Rights and dignity are a complex issue and there are rarely simple answers. To uphold one human right often means compromising on another. However, the best "rule of thumb" when evaluating these issues is to keep the focus on what will provide the best quality of life for the individual concerned. To stick rigidly to some general-purpose idea of rights that ignore what is actually best for that individual's wellbeing is illogical and often cruel. The right to self determination and bodily integrity are obviously important, but self determination becomes a meaningless concept when applied to someone with the mental capacity of a baby who will never progress beyond this (she would suffer & die if nobody made decisions for her!), and bodily integrity is secondary to happiness, physical comfort & life. If just leaving her body to do its own thing will cause her long term discomfort & distress, and will prevent her having a decent quality of life, is it morally better to just allow this to happen or to intervene?

I can understand the fear that cases like this represent the start of a "slippery slope", but if we keep in mind the essential individuality of every human being, disabled or otherwise, there is no need to fear that this decision would impinge on the dignity & rights of other disabled people. Decisions about the treatment of disabled people should always be taken on a case-by-case basis, although obviously we can learn important lessons from other relevant cases. The dangers arise when we start to treat "disabled people" as a discrete category of human being that ought to be treated differently to others - the reality is that we all have different needs, different abilities, different desires, and different life circumstances, and the way that the rest of society deals with us will differ from one individual to another. No matter what these differences are, the fundamental rights to happiness, dignity and life are sacrosanct, but the way these rights are best achieved will be different for each individual human being.

I know a couple with a five year old son with similar problems to the girl in the OP. As he grows, it does become more difficult to give the physical affection and attention he needs and deserves. You explain it all very well.

Wonders never cease!

Seriously, thanks for posting this.