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The Story of Amelia

Social media and blogs have been up in arms over Philadelphia Children’s Hospital’s treatment of 2 yo Amelia Rivera, Parents blog post. Amelia is in need of a kidney transplant. Her family wishes to donate a kidney to her and the hospital has refused to perform the operation because Amelia is considered cognitively impaired. They are concerned about what will happen to her if she lives when her parents eventually die. The doctors do not see past her ability to function TODAY only has some bearing on her ability to function TOMORROW.

I am a parent of a child, who at age 3, was practically nonverbal. His WPPSI verbal score was 70, and sign that at least verbally, he was mentally retarded. Our school district in fact declared him mentally retarded and told us he would never be mainstreamed. Today, he is in 6th grade and made the high honor roll, completely mainstreamed. He does not even resemble the same child he was at age 3.

Yes, Amelia has been diagnosed with brain damage, which was not the case with my child, but I have worked with adults who are mentally retarded in obtaining disability. Many of them have productive lives. Some are able to live independently with support. Other’s may always reside with family. There is no crystal ball that anyone can look into and determine how one’s life will turn out. There is only one way to find out, to LIVE that life. But the transplant team does not want to give that option to this little girl. They have declared her, at two years of age, beyond help. Their refusal to perform the transplant means that she will not get the chance to prove anyone wrong. She will not get the chance to go through therapy that may help become more independent. The same therapy that may show that her brain damage is not as extensive and she’s capable of more than anyone can imagine right now. She won’t get the chance, because she will die without the transplant.

They would let this child die, because based on today’s medicine she would need another transplant in her teens. Again, they do not have a crystal ball to tell them that medicine changes and changes quickly. What is certain today maybe a thing of the past in a decade. The only thing that is certain in this entire situation is they would rather have this little girl die then give her family a chance. Any parent that has lost a child will tell you that even one more day with their baby is worth any price to pay.

We talk about our society being enlightened and better than others, but we should judge how enlightened our society is by the way we treat the most vulnerable in our society, the elderly, the disabled, and our children. We have recently seen news about overhauling our Social Security disability system and now this. It is up to each of us to stand up and say enough. To say we are better than this.

Our Supreme Court and many state Supreme Courts have found that it is unconstitutional for a state to execute a mentally retarded person so why is it okay for our hospitals or insurance companies to do essentially the same thing.

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One of my friend’s blog post about Amelia