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.
“If Paul was a former vice president, a wealthy businessman or celebrity, we would not be having these conversations.”
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.
“I have tried to prevent him from seeing most of it,” she said. “I am afraid he will read something that puts him in an unfavorable light.” Karen said she worries that he’ll read something negative about himself or his capabilities, and that may make his anxiety and depression worse.
Paul is currently battling a fifth bout with pneumonia, a complication of his heart condition. Paul has Left Ventricular Noncompaction, a rare, congenital disorder that leaves his heart less able to pump blood throughout his body. Paul, whose father died of a stroke at age 27 due to the same disorder, has already survived three mini-strokes.
“He continues to cough, and becomes winded with the smallest of activities,” Karen said. “He rests a good portion of the day, and he’s gained some weight from lack of activity. He is still depressed about his situation, and wonders why he has to be autistic and have heart problems.”
A bright point in Paul’s day is working on a sequel to his self-published novel, Isaac the Runner. With all the press attention, the book is currently sold out on Amazon, but more copies are being printed.
“He was more excited that we sold all of his books and had to have more printed than he was about being on television news,” Karen said.
I didn’t ask to speak with Paul this time, because the interviews themselves are very stressful for him. As is the case for many people on the autism spectrum, Paul has to work hard when meeting new people, dealing with cameras, making eye contact, and talking.
“He has handled all the attention like a trooper,” said Karen proudly, however. “He said he would continue to be interviewed if it would help other autistic people and get him a heart.”
I asked Karen how she’s handling all the sudden attention.
“I am exhausted,” she said, adding, “but then again I usually feel that way, anyway! I am thrilled that his story is getting the attention it deserves.”
Karen, who works full-time and is a widow, said she relies on her close-knit, extensive family for support.
Paul’s records have been sent to the Mayo Clinic for a second opinion, and Karen is also in the process of scheduling a consult with the University of Pittsburgh Medical Center. In the mean time, she focuses on the day-to-day needs of a son with a serious, life-threatening heart condition.
(Photo credit: CBS-3 screencap)
Joslyn Gray is the mother of four children, two of whom have Autism Spectrum Disorders. Read more from Joslyn at Babble Pets and at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and Twitter.
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