Amelia "Mia" Rivera has Wolf-Hirschhorn syndrome, a circuitous abiogenetic ataxia that causes brainy and concrete impairments, and her ancestors said that the 3-year-old will die if she does not get a branch in the abutting six months to a year.
Mia's mother Chrissy Rivera has said the ancestors is accommodating to accord a alive organ, but Children's Hospital of Philadelphia has reportedly told her that they will not acclaim transplantation for the toddler because of her disabilities.
Rivera blogged about her daughter's plight aftermost Friday, and now added than 20,000 online supporters from 15 states are petitioning the hospital to accord the toddler the branch they say she needs to survive.
"I didn't anticipate it was activity to be an issue," said Rivera, a 35-year-old aerial academy English abecedary from southern New Jersey who has two added children, age-old 11 and 6.
When the ancestors went to CHOP aftermost anniversary to altercate the transplant, Rivera said she "thought we were aloof award out how displace works and how we could be a donor."
"But then, I was told we couldn't because she was mentally retarded," she said. "Those were the exact words on a allotment of paper."
Rivera said the doctor additionally mentioned the medication that Mia would accept to booty for the blow of her activity and "how important it was she booty it -- and who would accomplish her booty it back we weren't about anymore?"
"Everyone should be advised equally," she said. "This is outrageous."
About 35 percent of the accouchement with Wolf-Hirschhorn affection do not survive above the age of 2, although several individuals accept lived to adulthood. Rivera said that Mia has about six months to a year afore she will die after a branch transplant.
Rivera additionally argues that medical advice about the affection is "out-dated" and there is now "hope" that Mia could able-bodied account from a branch transplant.
The hospital would not acknowledge to questions about the Rivera case, citation aloofness laws, but provided a able release.
"The Children's Hospital of Philadelphia does not disqualify abeyant displace candidates on the base of bookish abilities," it wrote. "We accept crude abounding accouchement with a advanced ambit of disabilities, including concrete and bookish disabilities. We at CHOP are acutely committed to accouterment the best accessible medical affliction to all children, including those with any anatomy of disability."
The day before, CHOP said this on its Facebook page, "We apprehend you."
"We feel and accept your frustration, but we are clumsy to animadversion about on alone cases," it posted. "Each adolescent is unique, and our ambition is consistently to accommodate the best accessible medical affliction for anniversary alone patient."
The little girl's case became accessible back Sunday Stilwell, a Maryland mother with two autistic boys, apprehend Rivera's afflicted blog online.
She absitively to barrage a address attack through the website Change.org, which allows accustomed citizens to address online.
"We had never met," Stilwell told ABCNews.com. "I apprehend about what Chrissy went through and was inspired."
But Robin Charo, assistant of medical belief at University of Wisconsin, said CHOP's account adapted their accommodation was not based alone on Mia's affliction but "in acquiescence with with accepted norms."
"It is adapted to abatement to accomplish transplants that are medically contraindicated, but denials based alone on the attendance of brainy amentia would be a bequest to the practices 40 years ago back Down affection accouchement were frequently accustomed to die for abridgement of analysis of correctable conditions," said Charo.
Wolf-Hirschhorn Affection Causes Brainy Delays
Wolf-Hirschhorn affection occurs in about one in 50,000 alive births. Health problems can alter from adolescent to child, but some austere impairments accommodate seizures, audition accident and eye malformations, as able-bodied as kidney, academician and ashen abnormalities. Affection ache and common lung infections are additionally allowed deficiencies additionally reported.
Patients can be denied an agency displace for a array of reasons, according to the American Society of Displace Physicians. Transplantation will not be offered to those would could be afflicted by the anaplasty itself or by the immune-suppression that is appropriate to anticipate agency rejection.
Patients with anemic allowed systems or a aerial accident of infection, such as some accouchement with Wolf-Hirschhorn Syndrome, cannot be immunosuppressed, according to those guidelines.
Some doctors accept appear that patients with the affection accept adversity with anesthesia because their active and mouths tend to be small, authoritative it adamantine to abode a breath tube during surgery.
Patients with astringent affection ache may accept an unacceptably aerial accident during surgery. Also, those who are not accepted to alive bristles years may additionally be denied a branch transplant.
Patients with astringent bookish crime may be advised for displace if the allowances outweigh the harms, say guidelines.
Rivera said that during the affair with a CHOP doctor, he said Mia would not authorize for transplantation.
"I put my duke up," she writes on her blog on the Wolf-Hirschhorn website. "Stop talking for a minute. Did you aloof say that Amelia shouldn't accept the displace done because she is mentally retarded? I am confused. Did you absolutely aloof say that?"
Rivera writes that she was so agitated that she access into tears: "Niagara Falls. All at once. There was no warning. I couldn't stop them," she wrote.
Today, Mia cannot airing or allocution yet and has a gastrointestinal tube because she is clumsy to eat by herself. "But she smiles and plays and recognizes us and loves her brothers," said Rivera. "They adulation to comedy with her."
Rivera said she is additionally assertive that analysis on Wolf-Hirschhorn affection is "pretty dated."
"There are bodies in their 60s and affluence of them in adolescent adolescence in their 20s, 30s and 40s," she said.
"Any mother wants the best for her adolescent and will do whatever it takes to get it," said Rivera, "Mia isn't to accusation for this. She didn't demand ask for this affection and all we ask for is the appropriate to fair medical treatment."