Parents: Transplant for girl now a possibility at CHOP

The parents of Amelia Rivera, the disabled girl who was initially rejected for a kidney transplant at Children's Hospital of Philadelphia, now say the hospital has not ruled out such an operation.

The Riveras said they met with medical personnel at Children's Hospital for one hour on Friday, after which they were given instructions for how to proceed with a possible transplant - including how to have family members tested as possible donors.

Chrissy and Joseph Rivera, the parents of 3-year-old Amelia, said they were not told whether their daughter would be medically eligible. But they saw it as a step forward from what happened earlier this month. According to the parents, a physician told them on Jan. 10 that the hospital would not do a transplant because of the girl's mental disability.

"As of now, we're taking this as a positive sign," Chrissy Rivera said in a telephone interview Monday.

Amelia, whose condition is called Wolf-Hirschhorn syndrome, became the focus of national attention after the initial meeting. So far there are 37,000 signatures on a petition at change.org urging the hospital to change its initial decision.

On Monday, hospital officials said they could not comment, citing patient confidentiality rules. The hospital has said it does not make decisions on whether to do a transplant based on a patient's intellectual ability.

Wolf-Hirschhorn syndrome, caused by a missing piece of the fourth chromosome, results in a variety of developmental symptoms.

Some children with the condition die in the first year or two, but once past that hurdle, they tend to live for decades, said geneticist John C. Carey, professor of pediatrics at the University of Utah School of Medicine.

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