Amelia Rivera and CHOP: The Timeline
Amelia Rivera has Wolf-Hirschhorn syndrome, "a chromosomal disorder affecting about 1 in 50,000 people that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics." http://www.disabilityscoop.com/2012/01/17/claim-girl-transplant/14777/ For those that haven't been following this story, or who need a review, here's a timeline of the events in Amelia Rivera's story:
- January 2012 --> Chrissy Rivera blogs about an appointment at CHOP where a kidney transplant was discussed. She talks about seeing a paper that called Amelia Rivera "mentally retarded", and describes a conversation with a doctor and a social worker where she was told that Amelia was not a viable transplant candidate because of her intellectual disability. Read Chrissy Rivera's blog here. Over 40,000 people signed an online petition calling for the hospital to reverse its decision.
- February 2012 --> CHOP apologizes for how Amelia Rivera's case was handled and agrees to evaluate Amelia for a transplant, insisting that it doesn't discriminate on the basis on intellectual disability.
- August 2012 --> CHOP clears Amelia Rivera for a transplant, with Chrissy Rivera as the donor. Read Chrissy Rivera's blog here.
Chrissy Rivera's most recent update, posted on July 30, tells of how she donated her kidney to her daughter on July 3. Mother and daughter were released from hospital on July 12 and both are doing well.
Amelia Rivera and My Sadness
I am so happy that CHOP came around and that Amelia Rivera got the life-saving surgery that she needed. After all, she was only three years old when all of this began. I am saddened, however, and angered, that Chrissy and Joe Rivera had to fight so hard to get Amelia this surgery to begin with.
I'd been working with intellectually disabled people for almost twenty years when I started this blog, but I was terribly naive in many ways. The doctors with whom I'd had to work when I was supporting people had been great - I'd always been satisfied that the people I supported (of whom I'm very protective) were getting the same quality medical care from their doctors, specialists and surgeons that I was getting...that anyone was getting...and after my stroke, I was fairly experienced with doctors and with medical advocacy.
But still naive.
Learning that there are members of the medical establishment who are confident enough in their assumption that an intellectually disabled person can't have a good quality of life or contribute to society that they'd deny a three-year-old a life-saving transplant was a real eye-opener.
And just in case you think that this sort of attitude is an isolated incident, here are some other stories that I covered that were eye-openers for me:
AWA: Shocking Story of Ableism by a Hospital
Paul Korby Denied Heart Transplant; Autism Cited as One of the Factors
Protecting Babies with Down Syndrome
Let us be ever mindful that there's still much work to be done.
But for today...
...let's celebrate with Amelia Rivera and her family. I couldn't be happier that this story has turned out so well.