I’m happy to share an update on a story we covered earlier this year – about a young girl – Amelia – who has Wolf-Hirschhorn syndrome. Back in January, her mother wrote about an awful meeting at the Children’s Hospital of Philadelphia about Amelia’s failing kidneys. They were told by the transplant surgeon that her ‘mental retardation’ made her unsuitable as a candidate for receiving a transplant organ.
The story spread via twitter, blogs and facebook and lead to an outpouring of outraged advocacy from across the country.
By the end of January, the situation changed dramatically. The hospital strongly reaffirmed its commitment to nondiscriminatory treatment of disabled children and insisted that the original meeting was a series of misunderstandings. (No one besides the people in that room really know what was said) The main point, though, was that the medical team and Amelia’s family were talking about the course of her treatment over the coming weeks, months and years. That was good news in every way.
Here is the latest – and great – news from Chrissy Rivera, Amelia’s mom, in ‘Kidney Chronicles Part Three‘:
Our family received word about a month ago that Amelia is officially approved for the kidney transplant. All of her specialists, and some we have only just met, have agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about ten percent. She is at about 14% right now. Amelia was at 15% last December when we first heard the news that she would need a kidney transplant.
Of course, no one is celebrating the fact that Amelia needs a transplant. But we can all celebrate the fact that now that she will need one in the near future, everything is set for her to receive a new kidney.