By Stephanie Stahl
PHILADELPHIA (CBS) — Karen Corby is on a mission to save her son’s life.
“I made a promise to him that I would fight with every breath. No matter what it took we would fight,” Karen said.
The Pottsville mom has been fighting for her 23-year-old son Paul for years. He has autism and a mood disorder that sometimes causes angry outbursts.
“He likes to be alone and he’s uncomfortable around strangers,” Karen said.
Paul’s best friend is a doll he calls Princess Peach. He has also written a book.
“He’s very creative,” Karen said. “We self published a story that he wrote, and he’s working on a sequel to that.”
Four years ago Paul was diagnosed with a deadly heart condition. He needs a heart transplant, but the Hospital of the University of Pennsylvania is refusing to put him on the transplant list.
“I was devastated. I’m what any mother would be when they’re told their child is not going to get a life saving operation. I don’t see why anyone would think his life is less worthy of saving,” Karen said.
Because there aren’t enough to go around, organs have to be rationed. Doctors are put in the difficult position of deciding who gets them.
Doctors have to adhere to strict standards designed to make sure precious organs go to patients who are best medically situated to survive after the transplant.
Doctors at Penn Medicine say out of concern for Paul, they aren’t commenting on his case.
A statement says all transplant cases are individually evaluated for a variety of factors including, “…impact of other existing health problems…” and “… potential interaction between a patients existing drug therapies…”
Here’s what the doctor wrote to Karen, “I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Paul already takes almost 20 drugs a day and he’d need to take more after a transplant to prevent rejection.
Stephanie asked Karen, “Do you think Paul would be able to take his medication if he got this transplant?”
Karen replied, “He does now. He takes all of his meds. No questions.”
And Karen says he occasionally takes steroids, which haven’t caused behavior problems.
Karen has started a petition on the website change.org and has been joined by other autism advocates.
“Paul wants to speak for everyone on the autism spectrum that we’re worthy of life and we’re not second class citizens,” Karen said.
While doctors won’t say how long Paul has, Karen knows time is running out for a transplant.
“I want to save his life and that’s the only way,” Karen said.
Penn Medicine says over the last two years about 38 percent of potential heart transplant patients are told no, like Paul, mainly for medical conditions.
Karen hopes a different transplant hospital will take on his case.
Karen Corby’s Petition: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant
Gift of Life: http://www.donors1.org/