Has the world gone mad??? I read an article published today about a new treatment for severely disabled children... To make life easier for their parents.
The treatment is called "growth attenuation". The question is "Should parents be able to use medical means to restrict the growth of profoundly disabled children to make them easier to care for at home?" Click here to check out the article. Having recently seen yet another child given up for adoption, simply because he had Prader-Willi Syndrome, is just another reminder of how broken our society has become. To many have gotten their priorities all screwed up and are too focused of perfection and "stuff".
Maybe I am way off base here, but it seems to me that doctors go out of their way these days to avoid lawsuits for malpractice, in the way they treat patients. Now we want to give them another tool that, if approved, will eventually be loosely regulated and as a result of pressure from parents, will cause doctors to more frequently recommend this treatment based on expanded interpretation & opinion to benefit the parents. Perhaps instead of exploring ways to make our lives easier, we could do research for cures or treatments that could improve quality of life for those who are disabled and perhaps lead to prevention in the future.
I don't pretend to be an expert on all disabilities and I can't imagine any disability so bad that I would lose hope for the future.
I only really know the world of Prader-Willi Syndrome (PWS) and
despite all the negatives I had heard from doctors in the beginning who put PWS in a one size fits all box, I have met dozens of children & adults with PWS who are all different, with different levels of struggles and strengths. My daughter is not the person I would have expected her to be, based on initial doctors information. She is doing very well because the future for all of us is still in our hands. Prader-Willi Syndrome is what she has and not who she is!
Raising a special needs child is not easy, but I, like many many other parents around the world, am much stronger from it and my efforts have improved my daughters chances, and the chances for my three other children, toward living a better life. Understanding that we are killing ourselves with all the junk food we are eating and understanding that the quality of our food is not what it used to be, is just the beginning. We need to not only insure that our children are getting the proper nutrition, but that they are as free from toxins as possible and doing their part for the future.
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Have a friend that I believe suffers from PWS. We are seeing every sign that she has it and if it isn't seen about soon, I feel she will die early. She is 16 and cannot stop eating everything she sees and refuses to eat anything good for her. Thank you for sharing. Also I have a friend that also has Hep C. Milk thistle is very good for helping the liver.
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