It Could Be YOUR Child: #TeamAmelia

A few years ago I read a really great book, Second Glance, by  Jodi Picoult.  I found it riveting, suspenseful, and I couldn’t put it down.

After I read it, I realized that part of the story was based around actual events and it made me sick to my stomach.  An integral part of the story was the inclusion of the Vermont Eugenics Project in the 1920s and 30s.  In 1931 Vermont passed a sterilization law.  It was titled that it was voluntary but there are doubts how voluntary it really was.  Evidence shows that sterilization could occur simply if two doctors signed off on it.  Thirty-three states enacted a sterilization law.  During the war crimes trials after WW2, Nazi scientists cited AMERICAN eugenics programs as their foundation for their plans of “racial hygiene”.

If you’re still following along let me make it clear on who was “voluntarily” sterilized: “degenerate” families who were a drain on the economy, people who were in the poorhouses, mental institutions, or prisons.  People who were of different races were largely targeted- Abenaki Indians and French Canadians. 

Where am I going with this?

Recently, a story of a little girl, Amelia Rivera, with Wolf-Hirschhorn Syndrome, was told she could not receive a life-saving kidney transplant because she was “mentally retarded” and had “brain damage”.  On top of that, her family isn’t even asking to take an organ from a waiting list (though even if they were I still find this completely appalling).  They have a ton of family members all waiting and willing to donate a kidney.  Without this transplant Amelia will only live 6-12 more months.

Who is to decide who is the most deserving to live?  Are we going back to the Eugenics Project of the 20s/30s (which was only 80 years ago!)? Has this world grown any in tolerance?   Who gets to play God (or whatever higher-power you believe in) and point their finger at our vulnerable children, and say you don't get a chance to live?  

Brian is considered “mentally retarded”.  You all know I have a problem with that and don’t fully agree with it.  But it’s in his records and the medical community would see him that way.  If, god forbid, something happened to my baby and he needed a transplant could we be turned away?  Would someone look at me and tell me that my baby was undeserving of a transplant because his IQ was less than other’s?

I couldn’t imagine someone telling me my baby wasn’t worth saving. 

Someone telling me this boy, this boy right here, wasn’t worth their time.

This boy who has single-handedly shaped me into a strong, smart, patient, and compassionate person.

This little boy who can melt any person's heart.

This person who is the best snuggler in the world.

This person who rubs my cheek and says "I yuv you."

CHOP probably didn’t realize how strong the special needs community is.  How big even just the blogging portion of that community is.  I’m amazed and proud to be “friends” with so many of the bloggers who have started a petition, been blogging, and spreading the word about this.  Most of us have never actually met each other but we have helped each other raise funds for therapeutic dogs, have sent gifts to families who have hit hard times, and are always there to be a shoulder to cry on. 

And we're taking this on.  Because it could be our children.

Here is Amelia's mothers original account of the story.  The blog post that started it all: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Here is the petition started by Sunday Stilwell, of Extreme Parenthood, started: http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive 

PLEASE take the time to sign the petition and share it with everyone you know.  Do it for Amelia.  Do it for Brian.  Do it for all of the children who have cognitive limitations.