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Good News! Child With Disabilities May Get Kidney Transplant

Good News! Child With Disabilities May Get Kidney Transplant

 

After a doctor at the Children’s Hospital of Philadelphia (CHOP) denied Amelia, a 2-year-old girl with disabilities, a kidney transplant, parents of children with disabilities and disability right advocates raised a huge outcry. Chrissy Rivera, Amelia’s mother, described how Amelia needs the kidney transplant in six months to a year. But at a meeting earlier in January at CHOP, Rivera and her husband, Joe, were told that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.”

As today’s New York Daily News reports, the efforts of Amelia’s parents, backed by thousands of online supporters, seem to be helping. Rivera, a 35-year-old high school English teacher from South Jersey, says that she and her husband met with doctors on Friday to discuss Amelia’s situation and learned that their daughter might receive a transplant.

We had a positive meeting with the nephrologist and the head of nephrology and nursing…They took us through the steps and told us the risks. No decision has been made, but it’s a process … that anybody has to go through.

They are moving us through the steps…It is not a ‘yes’ or a ‘no’ at this point. But, yes, I am hopeful.

Rivera said that they will meet again with doctors in March.

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.”

As Erika, who — like Rivera and myself is the mother of a child with disabilities — wrote on her blog:

As a mother of a severely disabled child, let me also hereby reassure you that children with disabilities also can have a full, happy life and having an intellectual disability doesn’t actually hurt or cause suffering, it’s the reactions and attitudes of society towards it that is painful.

Thank you to all Care2 members who signed the Care2 petition urging CHOP not to discriminate against children with disabilities in need of essential medical procedures.

It is more often than not that one encounters the kinds of painful “reactions and attitudes” of society towards children and individuals with disabilities that Erika describes. Please help to keep up the efforts to ensure that Amelia, and individuals with disabilities, have full access to the medical care that is their — our — basic human right.

 

Related Care2 Coverage

Elite NYC Schools Must Admit More Students With Disabilities

Disability Rights: Sheltered Workshops Are Today’s Institutions

Will New Diagnostic Criteria End the “Autism Epidemic”

 

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Photo by Jeffrey N. Vinokur via Wikimedia Commons

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29 comments

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5:31AM PDT on Oct 7, 2013

Indeed good news. The mother had made a tremendous effort to save her daughter’s life. Even I had a liver transplant at the age of 19 in Justsavelives transplant center . Courtesy of their doctors who truly helped me in every condition and gave me a new life.

8:00AM PDT on Mar 29, 2012

that's so good

8:16PM PDT on Mar 18, 2012

Wonderful!! I hope everything goes in her favor. She deserves a chance to live just as anyone else does.

9:49PM PST on Feb 1, 2012

Good news thanks for update

6:13PM PST on Feb 1, 2012

So - CHOP appears to be (at least) listening to the parents at last!
As I said in an earlier post re. this case, from a medical perspective, this decision should never be decided on the basis of cognitive function, but on other factors. I am familiar with this case (doctors do talk to each other) and I can confirm that the parents were told that on the basis of their child’s “mental retardation” the doctor they spoke to (not the full committee at CHOP) based his decision on the child’s brain function.
From my experience, many children with special needs contradict much of the medical prognoses made in their early years. As a paediatrician whose experience has been primarily with children with special needs, I am wary when I hear the tired old comments re. “quality of life”. Many very severely disabled children do go on to have, what they regard, as a good quality of life. Only the individual themselves can decide this. CHOP does have an excellent reputation in child health care, but this case has the potential to put a large dent in this hard-earned status.

4:03PM PST on Feb 1, 2012

This is great news. Thanks for the update. They shouldn't have to fight for it anyway! What a shame.

2:15PM PST on Feb 1, 2012

You hear about all sorts of discrimination. Discrimination against the disabled for me is the hardest. It is easy for society to marginalize and ignore them. When the budgets run short, it is easy to cut services for the disabled because they don't have political power. They probably don't even vote. Gandhi thought that a society's character could be judged by the way their animals are treated. And he is right. But, as a mother with 3 disabled children I feel that society can also be judged by the way the most vulnerable mentally challenged are treated. Peace

12:31PM PST on Feb 1, 2012

"“..already brain damaged and mentally retarded.”

Is he talking about himself?

11:59AM PST on Feb 1, 2012

glad to hear it thanks!

11:38AM PST on Feb 1, 2012

Great News!!

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