Moyamoya Found in Young Girl Who Alerted Mother She Was Having the Worst Headache in Her Life

December 10, 2015

A rare disease called Moyamoya is affecting one Delphi family. Moyamoya Disease is a very rare disorder that affects the blood vessels in the brain. The disease causes the blood vessels at the base of the brain to narrow, slowing blood flow to the brain. If left untreated, Moyamoya can cause a stroke. Doctors understand very little about the causes.

If it weren’t for Valerie Huffman’s scars, she would seem like any other 17-year-old.
Her biggest joy used to be basketball.

But that all changed after playing in the pool with friends.

Valerie’s mother, Lisa Huffman said that was the first sign of her daughter having the disease.

“She was confused and then she’s like my head’s hurting more than it’s ever hurt before and so we took her to the hospital,” said Huffman.

Huffman said local doctors first thought it was Lyme Disease or M.S.
They had no idea she had a stroke.

“They were thinking she’s faking it or something like that well it’s because you can’t tell. You don’t think a kid is having a stroke,” said Huffman.

Huffman said that most of the doctors she contacted, had never heard of the disease.

“I knew that something was wrong. I kept telling myself to listen to my gut,” said Huffman.

Valerie’s doctor recommended she go to Riley Hospital for another opinion. According to the Huffman’s, The Indiana University Health Neuroscience Center is one of only a few medical centers in the nation with the specialized neurosurgical expertise to provide advanced treatment for Moyamoya disease.

That’s when they met Valerie’s new doctor, Jodi Smith said Valerie Huffman. Smith specializes in Moyamoya and has treated other patients.

“She’s awesome she knew exactly what it was,” said Valerie Huffman.

“Moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.

Valerie is scheduled to have her second surgery this coming Monday.
The surgery will decreases her chances of having a stroke from 80% down to about 4%.

Huffman said however, “she will eventually have a stroke it’s just when and is it going to disable her.”

Because Valerie can’t play basketball herself anymore, she goes to every game and sells bracelets, in hope that it will help pay for her surgery.

“God’s got it. That’s the way you just have to look at it. If he wants her he’s going take her. And if not, then she’ll just, wake up and fight the good fight,” said Huffman.

Valerie is hoping after the surgery, she can go back to being an average teenager.

Valerie Huffman has a gofundme, called Valerie Huffman 2 Brain Surgeries.

Thanks to for this piece.

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