Advocates Rally On Line For 3-Year-Old Denied Kidney Transplant

(From: USA Today)
January 17, 2012

PHILADELPHIA, PENNSYLVANIA– [Excerpt provided by Inclusion Daily Express] When Chrissy and Joe Rivera walked into a conference room at Children's Hospital of Philadelphia (CHOP) a few days ago, they thought they were going to see a slide show to help them start preparing their 3-year-old daughter Amelia for a kidney transplant.

Instead, a doctor and social worker told the Riveras that Amelia, who has a rare genetic disorder called Wolf-Hirschhorn syndrome, would not qualify for a transplant because she is "mentally retarded" and has "brain damage," Chrissy Rivera claimed in a blog post Thursday and in phone interviews.

The encounter shocked the New Jersey couple, but so did what happened next: The heavily connected online world of special needs parents kicked into high gear — and put one of the nation's top children's hospitals in a very hot seat. As of late Monday:

•More than 16,000 signatures have been added to an online petition at change.org demanding the hospital allow the transplant.

•Hundreds of complaints — along with some supportive comments for hospital staff — have been left at the CHOP Facebook page.

•More than two dozen bloggers, many of them parents of other children with disabilities, have put up posts supporting the Riveras and criticizing the hospital.

•Tweets using the hashtag #teamamelia continue to spread the story.

"That's the special needs community," says Sunday Stilwell, a Maryland blogger and mother of two boys with autism. She doesn't know the Riveras but started the change.org petition after reading the initial post and thinking "that could be my child," she says.

Entire article:
'Team Amelia' backs transplant for special needs child
http://tinyurl.com/6wr4u3u
South Jersey woman says daughter was denied transplant because of mental disability (NewsWorks)
http://www.newsworks.org/index.php/local/item/32692
MLK, Civil Rights & Denying a Kidney Transplant (Jewish Journal)
http://tinyurl.com/77z9rtj
Brick Walls
http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
Petition: Children's Hospital of Philadelphia: Allow the kidney transplant Amelia Rivera needs to survive (Change.org)
http://tinyurl.com/7hl7wdj