A 5-year-old who had initially been denied a transplant due to a mental disability, underwent a life-saving operation to receive a kidney from her mother. Amelia Rivera is now recovering and happy at home again, thanks to the Children's Hosptal of Philadelphia (CHOP), which agreed to provide her with the transplant after blocking it at first.
Amelia Rivera's case, which garnered supporters over social media last year, triggered change in New Jersey legislation to prohibit discrimination of transplant patients.
"Things are going really well for Amelia and we were very pleased with the care we received from [Children’s Hospital of Philadelphia]," Amelia’s mother, Chrissy Rivera, told ABCNews.com. Amelia underwent the surgery in July.
In early 2012, a doctor at the Children’s Hospital of Philadelphia reportedly told Rivera’s family that they did not recommend a transplant due to Amelia’s disabilities.
“I was told we couldn't because she was mentally retarded," Chrissy Rivera told ABCNews.com. "Those were the exact words on a piece of paper."
Amelia has Wolf-Hirschhorn syndrome, a condition that affects several parts of the body, and typically causes developmental or intellectual disability. Distinct features of the condition include craniofacial shape -- such as a flat nasal bridge and high forehead -- as well as seizures and congenital heart defects.
After Rivera turned to Twitter and other social media outlets to bring her complaint to the limelight, the hospital gave the family an apology, and later issued a statement saying, "We are gratified that the care and skill of the CHOP Transplant Team and clinical support staff have helped Amelia and her family… Throughout this process, we have been inspired by the love Amelia's parents have shown for their daughter, and, in particular, their fervent advocacy on her behalf.”
Amelia’s father, Joe Rivera, told the AP in 2012 that it was one doctor, not all of CHOP, who seemed to be blocking their daughter’s path to a life-saving kidney transplant: “It’s one doctor who’s never seen us who is making this call,” he said.
On her blog, the "Demolition of a Brick Wall," Chrissy Rivera wrote that in the summer of 2012, Amelia was finally approved to have a kidney transplant, noting that "every specialist agreed she had the same risks as any other child," and that her Wolf Hirschhorn's syndrome should not keep her from receiving her mother's kidney. She documents their family's journey through Amelia's medical struggles in the "Kidney Chronicles."
Chrissy Rivera hopes that Amelia's story in receiving a transplant will give inspiration to those facing a similar struggle.
"This wasn't a one-time deal that happened just to us, this happens across the world, across the United States," Rivera told ABC affiliate WPVI. "We hope that we can move forward as a society and include everybody."