An Update on Amelia

From left, Chrissy, Amelia and Joe Rivera

Several weeks ago, I wrote about a young girl named Amelia Rivera who was denied consideration for a kidney transplant at the Children’s Hospital of Philadelphia because she was, according to her doctors, “mentally retarded.” Now, two weeks later, I know hundreds of thousands of advocates, families and friends of people with disabilities congratulate the Riveras for their effective advocacy.  Amelia is now in the process of being considered again for a transplant.

Do we know if she will get it?  Of course we don’t.  I don’t envy at all the difficult task that medical professionals face when deciding the fate of potential transplant candidates.  I do know, however, that when Amelia comes up before the transplant committee this time around, every doctor on the committee will understand our community’s outcry about the value of every person’s life, including those with intellectual disabilities.   This is a wonderful example of how powerful change can happen when a community stands together on behalf of our most vulnerable.

Our lesson is that we cannot let Amelia’s story be an isolated call to arms. We must continue to seek change and advocate for the dignity of every human life.

I recently spoke with Amelia’s father, Joe, and I was inspired by his dedication not only to Amelia, but also to changing the hospital’s vernacular to respect the dignity of all people with intellectual disabilities.  ”I asked them to end their use of the word ‘Mental Retardation’ and we are advocating for the hospital to increase organ donations for everyone. We feel something positive has to come out of our situation and we hope that CHOP can work with us on making this happen” he told me.

We stand with you, Amelia, Joe and Chrissy, and continue to fight with you in this battle, and the next.

-T