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Rare disorder locks muscles, causes pain
CINCINNATI (Deb Dixon) -- One in a million; those were the odds of Kayla Pound suffering from "Stiff Person Syndrome."
The rare, neurological disorder caused part of Kayla's body to freeze like a statue. Propped up in her bed with computer, books and magazines, Kayla Pound looked like a typical 22-year-old relaxing. But Kayla was in bed Tuesday because her leg doesn't bend. It started two years ago in college when her knee started locking up, then it stayed that way.
"I can't drive, can't walk, I can't dance," Kayla told Local 12. "I can't go to the bathroom properly, I can't shower."
When Kayla did get up with a walker, it was painful. Now the stiffness has started spreading to her hips. One diagnosis given was Stiff Person Syndrome.
Kayla kept the blinds closed so she didn't see what she was missing Tuesday. She is enrolled in online college courses but the friends she started college with graduated this year. She likes to look back at what life used to be like.
The syndrome is so rare there is no cure. But there was something that seemed to work on two women in Canada. They were part of a clinical stem cell trial in Seattle.
Roxanne Pounds, Kayla's mother, said, "One is in complete remission, the other has ended her treatment but she's doing well. She's so much better; she's looking forward to having her old live back, she sees it it's so close."
In Canada insurance paid for the transplant but not in America. There would be a $400,000 deposit. Robert Pound's coworkers at Hamilton County Communications are putting on a benefit to help. As the family waits, Roxanne has started to worry more about Kayla's spirit that her body.
Kayla remains hopeful. She thinks about graduating from college, going to her first Bengals game and more. Much more.
"I want to be able to walk down the aisle. I've never slow danced with a guy," she said.
Friends and family planned a fundraiser to help with the staggering expenses of the stem cell transplant. It's August 9 at the Woodlands in Whitewater Township and includes dinner, live music, a silent auction and raffles.
CLICK HERE for more information on the event.