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Terri Mauro

Good News and Bad News About Transplants for Kids With Special Needs

By August 9, 2012

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No HeartRemember Amelia Rivera? We were thinking about her a lot back in January, when her mother blogged about a very bad meeting at the Children's Hospital of Philadelphia that ended with a doctor making it very clear that Amelia could never receive a kidney transplant, even from a family donor, because she has an intellectual disability. The hospital's Facebook page blew up with outrage over that, and the family ultimately received an apology. And this week came word that Amelia has been approved to receive a new kidney, from her mother, when her kidney function falls low enough. You can read more about this latest chapter in Amelia's story on her mother's blog.

Unfortunately, news of this heartening development comes in the same week as stories about Paul Corby, a 23-year-old who has apparently been denied a place on the heart transplant list because of his place on the autism spectrum. His mother has created a petition at Change.org calling on the heart transplant committee at Penn Medicine at Radnor, as well as a list of political entities running all the way up to the president, to have a heart and put her son on the list. For more on the story, I'll start a running list of blog posts and reactions:

If you've seen or written something about Paul Corby, post a link in the comments and I'll add it in. You may also, in addition to the petition, want to add your name and story to my We Expect Respect manifesto, if you haven't done so already. Let the world know that our kids with special needs are loved, valued, and advocated for.

November 15, 2012 at 6:27 pm
(1) Susan says:

This same scenario is playing out in the Pacific Northwest as I type, regarding a 9 year old boy in Portland with cardiomyopathy and autism. Unbelievable and unforgivable. -Susan B.

November 15, 2012 at 6:30 pm
(2) Susan says:
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