Amelia Rivera, a four-year-old New Jersey girl with Wolf-Hirschhorn Syndrome who was initially denied a kidney transplant by Children’s Hospital of Philadelphia last January, will be getting a new kidney after all.
The kidney will be donated by her mother, Chrissy Rivera.
Ms. Rivera wrote in a blog post yesterday:
“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.”
Amelia’s case received national attention after Ms. Rivera wrote a blog post entitled “Brick Walls” that detailed her agony when her daughter was initially denied a transplant due to, as it said on documentation, her “mental retardation.”
Blogger Sunday Stillwell created an online petition at change.org asking CHOP to reconsider its decision. The petition was signed by over 50,000 people.
“I am beyond thrilled that Mia will finally receive the kidney transplant she deserves,” said Ms. Stillwell in an email to me. “I am thankful for the power social media played in changing the hearts and minds of those responsible for making this decision.”
“Team Mia” gained support from Timothy Shriver, the CEO of the Special Olympics, and New Jersey State Senate President Steve Sweeney.
Throughout the ordeal, Amelia’s parents, Joe and Chrissy Rivera, remained optimistic that CHOP would reconsider, and praised the care Amelia had received at the nationally-renowned children’s hospital.
In a statement jointly released by CHOP and the Rivera family in February, the hospital apologized, and stated that it would be changing some of its policies. In the statement, the Riveras said,
“Despite an unfortunate encounter a few weeks ago, we hold The Children’s Hospital of Philadelphia in high regard. We’ve had a three year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community’s sensitivity to and support for the disabilities community. By agreeing to update their process and materials to put people first, above their diagnoses, a respect for people’s humanity is communicated above all else.”
In the wake of the immense outcry over Amelia’s story, legislation was passed in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability. The Children’s Hospital of Philadelphia, while based in Pennsylvania, has primary care and specialty care offices in several New Jersey locations. It also has affiliations with hospitals in Princeton and Somers Point, NJ.
(Photo Credit: wolfhirschhorn.org)
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