By: Shifra Unger
Allie Barone of Clinton, New York, was diagnosed with Chiari I malformation, a condition that develops when brain tissue protrudes into the spinal canal, after suffering from severe headaches several Earlier this year, according to reports.
"Her brain stem was compressed and crushed by the opening of the base of the skull, where the skull was found in the spinal cord, is supposed to be wide open," her mother, Stephanie Barone said.
"When the spinal fluid could not enter her brain, she had headaches."
About 1 in 1,000 people are born with a Chiari malformation, which is sometimes treated with surgery to decompress the brainstem.
Although the prognosis is good for those who undergo surgery, Allie had to fight a much more rare and difficult form of the disease as she began leaking spinal fluid from the incision after the initial surgery.
Dr. Robert Keating, professor and chief of neurosurgery at Children's National Medical Center in Washington, DC, where she was being treated, performed two operations to stop the leak in August and the brave young girl finally began to show signs of recovery.
She started to sit and draw in the hospital room, a hobby that has been honored on a Facebook page dedicated to the work of the young girl.
But one day, when Allie was drawing and their parents were signing discharge papers she realized that the incision had started leaking again.
"She said: 'It's leaking again, Mommy’, and we both knew what this means, we were not going home the next morning, and she needed another surgery," Stephanie said.
"It was a very painful time for all of us, and then it turned out to be what finally helped doctors find the problem."
For the fourth surgery, the doctors decided to perform the operation with Allie sat up, as if she
were drawing, as previous surgeries were done while she was lying down.
It was this position that allowed the doctor to realize that Allie’s second vertebra was deformed and causing the leak.
Stephanie said Allie has made great progress since her fourth surgery and returned to school last week with more energy than ever.
"She's like a new child," Stephanie said.
Data on the success rate of people with Chiari malformation does not extend beyond 10 years, says Dr. Keating, but maintains that he is very optimistic.
"she is quite a character," he said.