6-year-old battles rare disorder that causes her skull to be too small for her brain

Brave Allie Barone has gone through 4 surgeries to correct her condition — a Type 1 Chiari malformation.

Allie Barone, 6, was diagnosed with Type I Chiari malformation after suffering from several painful headaches earlier this year.


A 6-year-old girl is battling a rare disorder that has made her skull too small for her brain.

Allie Barone of Clinton, N.Y., was diagnosed with Type I Chiari malformation, a condition that develops when brain tissue juts into the spinal canal, after suffering from several painful headaches earlier this year, Fox News reported.

"Her brain stem was compressed and squished through the opening of the base of her skull, where the skull meets the spinal cord; it's supposed to be wide open," her mother, Stephanie Barone, told Fox News.

"When the spinal fluid couldn't get into her brain, that's why she had the headaches."

About 1 in 1,000 people are born with a Chiari malformation, which is at times treated by surgery to decompress the brain stem.

Though the prognosis is good for those who undergo the operation, Allie had a much more unusual and difficult struggle as spinal fluid began leaking from her incision after her initial surgery.

Doctors realized that Allie needed surgery for the fourth time when her incision began leaking as she was drawing in her hospital room.

Dr. Robert Keating, professor and chief of neurosurgery at Children's National Medical Center in Washington, D.C., where Allie was being treated, performed two more operations to curb the leaking in August and the brave young girl finally began to show signs of recovery.

She started sitting up and drawing in the hospital room - a pastime that's been honored on a Facebook page devoted to the young girl's artwork.

But one day when Allie was drawing - and her parents were signing her discharge papers - they noticed the incision had begun leaking again.

"She just said, 'It's dripping again, Mommy;' and we both knew it meant we weren't leaving the next morning, and that she needed another surgery," Stephanie said.

"It was a heartbreaking hour for both of us, and then it turned out to be what finally helped the doctors find the problem and get us home."

For the fourth surgery, doctors decided to perform the operation with Allie sitting up, as if she was drawing, since the previous operations had been done while she was lying down.

Allie has made major strides since her fourth surgery, returning to school last week with ‘more energy than ever,’ says her mom, Stephanie Barone.

It was this position that allowed doctors to realize that Allie's second vertebrae was misshapen and causing the leakage.

Stephanie said Allie has made major strides since her fourth surgery, returning to school last week with "more energy than ever."

"She's like a whole new kid," Stephanie added.

Data on the success rate of those with Chiari malformation does not extend beyond 10 years, says Dr. Keating, but he maintains that he's very optimistic.

"She's quite a character," he said.