Sunday, January 15, 2012

Tearing Down Brick Walls - Fight For Amelia



I wanted to write this post yesterday, but I don't even know where to start.  I do funny. I write about falling off treadmills or my dog making me chase her around the neighborhood for hours.  But there is nothing funny about this story.  Nothing.  In fact, I'm angry.  
I hope that by now you've heard about Amelia Rivera, a 2 year old with Wolf-Hirschorn Syndrome, who is being denied a liver transplant by the Children's Hospital of Philadelphia because she is mentally delayed.  No, that's not a typo.  They won't give her one because when she's 30 she might forget to take her medicine.  Apparently, the life of someone, a CHILD,  with mental retardation is not worth their time.  Oh, to add to this, they are going to find their own donor.  Her family isn't even trying to get her on the general donor list.

Here is the link to the posing that this baby's mom made about her visit to CHOP. http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

So, what can you do?  You're just one person, right?  

  • Sign the petition at Change.org:

I've seen Change.org get things moving many times.  All they need is your "signature."
  • Leave a message on the Facebook page of the Children’s Hospital of Philadelphia:

And share this story with whomever will listen.  If you have media connections, please let them know. Share it on Facebook, on Twitter, on  your own blog.  Please don't let this injustice stand.
Also, please remember that even though you may be angry, be civil.  Calling someone nasty names is not going to get anyone anywhere.  We want them to listen to us and take us seriously.






2 comments:

  1. Thank you so much for this post Crystal! It means so much to so many!

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  2. Awful story. I'm glad Sunday and others have run with it. I read CHOP's facebook response, and I'm not satisfied with it. I'm sure their policies prohibit discussing specific kids' cases, but if the mother's blog post (which was fantastic, btw) is to be believed, they have a doctor they need to have a long frank discussion with, and the parents need a new social worker.

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