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Mentally disabled child denied kidney transplant

Monica Beyer is a mom of four and has been writing professionally since 2000, when her first book, Baby Talk, was published. Her main area of interest is attachment parenting and all that goes with it, including breastfeeding, co-sleepin...

Docs deem her quality of life poor

The internet quickly went up in arms after reading a blog post from the mother of a little girl who has been denied a kidney transplant based on her mental disability.
Hospital

Read on to learn why the doctors felt she wasn't a good candidate and what is being done to fight back.

Crissy and Joe Rivera are the parents of 3-year-old Amelia, who suffers from a rare genetic disorder. According to a blog post by Crissy, they were told that Amelia does not qualify for a kidney transplant due to her mental disability and brain damage. Crissy alleges that the doctors were not optimistic that the procedure could ever take place at the Children's Hospital of Philadelphia.

Wolf-Hirschhorn syndrome

Amelia was born with a rare genetic disability called Wolf-Hirschhorn. Wolf-Hirschhorn syndrome affects many parts of the body, with most patients exhibiting a specific facial appearance, developmental and mental delays, seizures and growth impairment. In addition, Amelia is suffering from kidney failure and is not expected to live much more than another six to 12 months if she doesn't get a transplant.

Amelia's mom and dad sat down with a doctor to discuss a transplant and were horrified when the doctor explained that she was not eligible due to her "mental retardation" and "brain damage."

Crissy said that the doctor told her:

The online furor

Crissy reached out via an online blog and the word quickly spread among the tight-knit special needs community, and an online petition was started. The issue soon began popping up on parents' radars everywhere.

Natalia, mother of one, was furious when she heard the hospital's decision. "As a mum of a child with a disability, this makes me sick," she said. "This little girl has her whole life in front of her."

Jen from Canada has a history of working with students with special needs. "I worked with a student that had that same thing she does," she shared. "He was beautiful and sweet and I loved working with him. I feel fortunate to have had him in my life for the few years he went to high school. He passed away a few years ago and my heart shattered. I think of him often."

Harsh reality

Shannon, mom of one and a receptionist at a nephrology practice, says she's not totally surprised. "If you can't pass a psych evaluation, you can't get a kidney," she explained. "It doesn't matter if it is a family member. It's also not a matter of being on a transplant list or who has priority. It really just comes down to your mental status and whether they think you are capable of thriving afterward."

What really matters?

It all boils down to who is considered worthy of a serious surgery like this that will require specific medication for the rest of the patient's life. The doctors cited several reasons for the denial, including questioning who would monitor Amelia and give her medication after her parents pass away. But Jen, who has seen firsthand the joy and beauty of disabled children, had this to say: "The little girl in this article is three. The boy I knew with the same syndrome was 23 when he died. He was a person just like anyone else. So is this little girl."

More on kids with special needs

The truth about parenting a child with special needs
Special needs kids and well siblings
Providing for children with special needs

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