How a Deperate Mom Fought to Get Autistic Son on Heart Transplant List

 

Isaac, who's fighting to be placed on a heart transplant list.

Isaac, who’s fighting to be placed on a heart transplant list.

by Joslyn Gray –

After spending more than a year trying to get someone interested in her son’s story, Karen  Corby is now finding the media attention coming fast and furious. In June of 2011, Karen received a letter from Penn Medicine regarding her 23-year-old son Paul. The letter stated that Penn Medicine, which is part of the Hospital of the University of Pennsylvania, was not putting Paul on the heart transplant list.

One of the reasons listed for the denial is Paul’s autism.

After our post here on Strollerderby ran last week, signatures on Karen’s change.org petition jumped from about 4,000 to over 10,000 in a matter of days. The increase in signatures wasn’t simply because Strollerderby ran a story.

Signatures on the petition jumped because the autism and special needs community shared the heck out of that story on social media.  Whether or not they had family members with special needs, people saw that something doesn’t seem right about disqualifying someone from life-saving treatment, and using autism as one of the reasons.

Yes, transplant decisions are complicated. Yes, donor hearts are a rare and precious resource. But there it is, in black and white, in the letter from Penn Medicine: autism.

“If Paul was a former vice president,” Karen said to me in an interview today, “a wealthy businessman or celebrity, we would not be having these conversations.”

The  Philadelphia Inquirer became interested, and then Philadelphia’s CBS-3 picked up the story. And then, seemingly overnight (except it was really more like 15 months) Paul’s story became national, and then international, news.

For Karen, a mom from Pottsville, Pennsylvania, it means she’s been suddenly thrust into the role of being a national spokesperson for the rights of people with autism and with cognitive disabilities.

“I hope that we can make a difference,” Karen said. “Our biggest fear is that this will all be for nothing.”

Karen said that she shields Paul from much of the news.

Read more at Autistic Man’s Quest for Heart Goes Viral.

[From Strollerderby  at blogs.babble.com.]

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Comments

  1. Liz Joyce says:

    I hope this young man gets on the list!

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