A Fighting Chance

Let's cut to it, shall we? A little girl named Amelia has Wolf-Hirschhorn Syndrome, "a condition that..results in severe developmental retardation, a characteristic facial appearance, and may include a variety of other birth defects. includes developmental retardation and other birth defects." Amelia's mother, Chrissy Rivera, blogged last week about her daughter's need of a kidney transplant, and how she was told her daughter was being denied the surgery at Children's Hospital of Philadelphia because Amelia is "mentally retarded". According to Ms. Rivera, no other medical reason was given, or necessary in the view of the transplant specialist. The family said that they had people who would donate a kidney to Amelia, but she was still denied.

In the disability community, there has been an uproar. The Children's Hospital of Philadelphia's Facebook page has had non-stop comments, imploring the hospital to reconsider. Sunday Stillwell over at Adventures in Extreme Parenthood started an online petition asking others to support Amelia, and you can find it here. Please consider adding your signature to the (as of this writing) 12,000+ people who have taken the time to show their support.

So let's take a look at this issue. I have spent the last 48 hours trying to convince myself that this is rare, that this is not how our medical institutions operate, that people with intellectual disabilities are not routinely denied life-saving care and organ transplants. I have Googled everything there is to Google. I have looked at different countries, different governments, different decades... and now I have to face what I have long feared -- that people who are considered "mentally retarded" have time and time again been denied, or transplants have not even been suggested as a solution to failing organs. Sometimes there are so many physical complications that a patient may not survive the procedure, but more often than not, studies have shown that most (oh please, tell me there are some out there) most people with "mental retardation" - even in the United States -- are not presented with the option of a transplant even if it could save their life. I found scholarly papers by transplant professionals in all parts of the world who support transplants for people with intellectual disabilities, stating ethical and moral grounds, as well as viability of success at least equal to those with "normal IQ".

Here's what I have been trying to process for the last two days:

1. As far back as I can research, I discovered that many in the medical profession believe it is a waste of resources -- organs, professional time and effort, etc. -- granting transplants to people who have been deemed "mentally retarded".

2. It seems that most people feel that individuals like Amelia, those with intellectual disabilities, should be entitled to have a kidney transplant, especially because one is being provided to her by a family member.

And here's what has keeps me up at night:

1. There are people who believe individuals with lower than normal IQs do not have the right to life-saving medical procedures involving organ transplantation.

2. There are people who believe individuals with lower than normal IQs have the right to life-saving medical procedures involving organ transplantation if there is an organ available from the family.

3. There are people who believe individuals with lower than normal IQs do not have the right to a spot on a waiting list for a compatible organ donor.

4. There are people who believe that my son, along with the other 100+ individuals I know who have intellectual disabilities are not entitled to a life-saving organ transplant under any circumstances.

5. People with intellectual disabilities around the world have little to no access to life-saving organ transplants.

This has been happening for years and years and years. This is not politics. If you think this has anything to do with upcoming "Obamacare" changes, you're a fool. This is about discrimination and always has been. There are people who think children like mine, and adults who were once children like mine, do not deserve to live. Sound overly dramatic to you? Go read Amelia's story again. She wasn't even given a fighting chance.

At present, there are very few places on earth that would help my son if God forbid he ever needed a new liver, a new kidney, a new heart. My son. My little boy.

What about your children? Your friends' children? Which side of the line do they fall?

Please help us help ourselves. "You and I have got to do for you and I." Fight back. Holler and scream to anybody you can find about Amelia and your children and your friends' children and adults who were once children like ours. Call the newspapers, the television stations, the hospitals, your members of government. Tell everyone you know about Amelia, and how it is wrong that people with intellectual disabilities are denied life-saving medical care. Fight back.

And become an organ donor, damnit.