Tell CHOP Not To Discriminate Against Children With Disabilities

Parents of children with disabilities and disability rights advocates are raising a huge outcry after a doctor at the Children’s Hospital of Philadelphia (CHOP) denied 2-year-old Amelia, who has Wolf-Hirschorn Syndrome, a kidney transplant. 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.”

Chrissy Rivera, Amelia’s mother, says that her daughter's doctor had told them that she would need a kidney transplant in 6 months to a year. Rivera then describes how another doctor accompanied by a social worker told her and her husband, Joe, that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.”

We, the undersigned, request that you provide individuals with disabilities with the medical treatment, including organ transplants, that they need and that you not discriminate against them on the basis of their disability. 

Parents of children with disabilities and disability rights advocates are raising a huge outcry after a doctor at the Children’s Hospital of Philadelphia (CHOP) denied 2-year-old Amelia, who has Wolf-Hirschorn Syndrome, a kidney transplant. 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.”

Chrissy Rivera, Amelia’s mother, writes that her daughter's doctor had told them that she would need a kidney transplant in 6 months to a year. Rivera then describes how another doctor accompanied by a social worker told her and her husband, Joe, that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.”

Before the 1990s, transplants were "considered inadvisable for those with cognitive impairments." But now the United Nations Convention on the Rights of Persons with Disabilities charges that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability" (Article 25). 

We ask that CHOP, in accordance with the UN's statement and in respect of the rights of individuals with disabilities, not deny Amelia the kidney transplant that she needs to live. 

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