After a doctor at the Children’s Hospital of Philadelphia (CHOP) denied Amelia, a 2-year-old girl with disabilities, a kidney transplant, parents of children with disabilities and disability right advocates raised a huge outcry. Chrissy Rivera, Amelia’s mother, described how Amelia needs the kidney transplant in six months to a year. But at a meeting earlier in January at CHOP, Rivera and her husband, Joe, were told that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.”
As today’s New York Daily News reports, the efforts of Amelia’s parents, backed by thousands of online supporters, seem to be helping. Rivera, a 35-year-old high school English teacher from South Jersey, says that she and her husband met with doctors on Friday to discuss Amelia’s situation and learned that their daughter might receive a transplant.
We had a positive meeting with the nephrologist and the head of nephrology and nursing…They took us through the steps and told us the risks. No decision has been made, but it’s a process … that anybody has to go through.
They are moving us through the steps…It is not a ‘yes’ or a ‘no’ at this point. But, yes, I am hopeful.
Rivera said that they will meet again with doctors in March.
Wolf-Hirschorn Syndrome is a genetic condition occurring in 1 in 50,000 individuals. Those with it have a “characteristic facial appearance, delayed growth and development, intellectual disability, and seizures.”
As a mother of a severely disabled child, let me also hereby reassure you that children with disabilities also can have a full, happy life and having an intellectual disability doesn’t actually hurt or cause suffering, it’s the reactions and attitudes of society towards it that is painful.
Thank you to all Care2 members who signed the Care2 petition urging CHOP not to discriminate against children with disabilities in need of essential medical procedures.
It is more often than not that one encounters the kinds of painful “reactions and attitudes” of society towards children and individuals with disabilities that Erika describes. Please help to keep up the efforts to ensure that Amelia, and individuals with disabilities, have full access to the medical care that is their — our — basic human right.
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