Amelia

I came across Amelia’s story via the online special needs community of blogs and twitter. (I think there is a hashtag #TeamAmelia and #lifeformia)

I can’t help but share because as a human being and as a parent of two equally amazing children, one of which has special needs, this antiquated idea that children with cognitive disabilities have a lesser quality of life and are not worth saving, is gut-wrenching. Raising Asperger’s Kids wrote a really great post regarding this issue, as did Love That Max. Sunday Stilwell who blogs at Adventures in Extreme Parenting and who I first heard Amelia’s story from, started a petition on Amelia’s behalf.

A friend of Amelia’s family wrote a post and included many great ways to help and there are many others who’ve written, tweeted, sent emails and are rallying around this family the best they know how.

The Children’s Hospital of Philadelphia wrote a nice, neat response on their Facebook page full of politically correct jargon.

It amazes me, in a sickening way, that the value of a human being’s life is still up for question. We live in a modern day society that has made so many advancements in so many areas, especially medically, yet still even the most prestigiously educated subscribe to the antiquated idea that someone’s cognitive abilities should play a factor in whether or not they are worthy of a life saving transplant. A human life is never a commodity to be tossed away.

I’ve read that some question the validity of what is being passed around on twitter, blogs and facebook. Some wonder if the whole story is being portrayed or if there’s too much emotional hype blocking the truth. I get that. There’s always his side, her side and the truth. Here’s the truth: A human being, whether disabled or not, is a life full of value, full of quality, and Amelia’s parents should not have to fight tooth and nail to get their daughter the care she needs. The medical community should be on their side, they should be the one’s rallying around this family. A medical professional and a social worker should never be aloud to tell parents (let alone decide) that “Mental Retardation” is the factor in why they will not do a life saving transplant. It’s worth mentioning, that the family intends on donating, so they aren’t even asking to take a kidney from the donor’s list. If there are other weighing issues, fine, every transplant candidate goes through rigorous inspection, but using “Mental Retardation” as even one reason, let alone the major one, as the deciding factor is wrong.

So yes, this story is hyped with emotion, but if it weren’t I’d be even more appalled. It’s also hyped with truth. It may not be our child, but in some tiny way it is, in that we’ve all had to fight for our child’s rights; And if we didn’t share and speak out – with great emotion – we’d be silently condoning the archaic thought behind the decision to deny Amelia’s surgery. To tell a parent they will not give their daughter the life saving transplant because of her quality of life…her cognitive abilities, well that speaks volumes to the value those professional’s hold on a human life. Sad and terrifying.

I’d love if you’d read the posts written on Amelia’s behalf, sign the petition, send emails, pray and share in any way you can. 

Amelia’s parents share their story on Wolfhirschhorn.org here and I’m sure they will update when they can. I can’t imagine the process they are going through.