PHILADELPHIA – The parents of a 3-year-old New Jersey girl say she’s being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.
The girl’s mother, Chrissy Rivera, last week posted a blog entry that described an encounter she claimed happened at The Children’s Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.
“I put my hand up. `Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
Rivera’s story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she
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