Seldom am I so touched by the words I read on a screen. I have always been a passionate person, but I seldom show emotions of hurt or pain, if I have them. When something touches me to where I feel hurt, pain, sadness, anger and a myriad of other emotions, I know that whatever it is must be powerful. Today, I felt this. Today, I wanted to cry. Today, I felt appalled, disgusted, furious, and hurt. It was because of Amelia.
I don’t know Amelia. I do not even know her mother or her father, Joe. What I do know is that this adorable little girl is facing a battle that could mean life or death. She came into this world already against the odds, with a rare genetic disorder called Wolf-Hirschhorn Syndrome. One of the typical characteristics of this disorder is mental retardation. Still, when you look into the eyes of little Amelia, you see the window to her beautiful soul. It shines through her pictures. You can see her will and might – a will that has kept her alive despite odds that see many children with WHS dead before their first birthday.
Amelia needs a Kidney Transplant. She needs it within the next six months to a year or her kidneys will fail and she will die. Her parents do not want her on a transplant list. They wish to donate their kidneys instead. If they are not matches their large family is full of potential donors. One of them is bound to be a match, to keep little Amelia alive longer. She may experience life in her own little world, but it is a world full of love, no doubt. Her mother and father clearly love her very much and her mother is willing to fight to see her child live.
Unfortunately, the transplant team at Children’s Hospital of Philadelphia believes that in spite of her beautiful smile and her ability to display emotion, even in pictures, this child has such a low quality of life. The only reason for this is due to her mental retardation and the brain damage characteristic of WHS. Amelia can clearly still feel and react. She is not what medical professionals deem a vegetable. She merely faces developmental delays that are characteristic of mental retardation. Apparently, this is common practice for patients with MR/DD. It is the Eugenics movement, at its best, trying to weed out those society deems unfit.
Who gives these doctors the right to determine who lives or dies? Why must her parents sit back and watch their child die in six months to a year? Is it not the responsibility of a medical professional to provide patients with medical treatment and preserve life, if they are able to? It seems to me, all Amelia needs to continue living is a transplant. These doctors are breaking their Hippocratic oath by refusing her treatment. This is disability discrimination at its best, disguised as deeming it “what is best for her”.
In a civilized society, slowly letting organs shut down, ones that can be fixed by transplants, seems barbaric. Yet, here we are in 2012 doing this to an innocent, beautiful child. It boggles my mind that these things are allowed to go on in our hospitals and yet they happen regularly.
Imagine back to 1975, when it was still legal to keep a person like me, you know – one in a wheelchair, from attending mainstream, public school. That is a little over 35 years ago. People like me, who could not walk, were deemed unfit to go to public school. Delve just 20 years back from that and people like me were still deemed unfit to live. Because we could not walk, we were believed to have a low quality of life.
Thanks to technical advances and assistive devices, people like me, with physical impairments, are doing magnificent things. Looking at all I have accomplished in my life, I wonder what would have happened to me had I still been deemed as having a low quality of life. Look at young Becky on Glee. She has Down Syndrome, a form of Mental Retardation, and yet she is a bubbly and vivacious actress! Imagine if she had believed she had a low quality of life. She would never have been able to humanize the face of Down Syndrome with the American public, much like her predecessor, Chris Burke, did in the 1980s.
Amelia deserves a chance at a future. I urge her parents not to give up. To them, I say this: I support you and many others I know do, as well. I recommend finding a new hospital, one that sees Amelia as a person and not a diagnosis, because that is what she is; a beautiful little girl, about to change the world with her story.
I urge you to check out Amelia’s picture and read her mother’s heartbreaking tale at The WHS Blog.
Update: Help Amelia’s family out by signing a petition against the decision CHOP has made. To do so: GO HERE.