Teen, family struggle with rare disorder

OLATHE — He thought he was having headaches. But for teenager Brett Foster, those headaches didn't go away; they got worse and more frequent — up to three or four per day — and then, about four months ago, they got debilitating.

Brett was suffering from Chiari-1 malformation, a rare and frequently under-diagnosed neurological disorder in which the cerebellum comes down into the spinal chord area.

Since that time, the hard-working student who loves to swim has endured surgery that wiped out his family's finances.

"They found it right at the end of September," Jeremiah Foster, Brett's father said. Foster, of Olathe, works as a Montrose County Sheriff's deputy.

"From there, it was trying to find a doctor who would do the surgery, because we don't have insurance. That was a little tough."

But in between his diagnosis and the Nov. 10 surgery, Brett began passing out.

"He was having headaches, sometimes 20 a day. They're debilitating headaches. He was having numbness and weakness in his shoulder and arms."

Foster said his son's cerebellum console was malformed and herniated into his spinal canal, pinching the spinal chord. The herniation measured 23 mm.

Brett was able to have surgery in Salt Lake City and is back at school. He swims for exercise, but still has numbness in his arms.

"He's doing OK now. It could be six months to a year before we know what his total recovery is," Foster said. "He's doing really well compared to how he was doing just a month and a half ago."

The stakes were high. Without surgery, Brett could have been paralyzed from the neck down, sustained permanent nerve damage, or even died.

"It herniates and shuts your breathing off," Foster said.

"The doctor said Brett's was the second largest Chiari herniation he'd seen where they didn't have more significant side effects from it."

Brett returns to the doctor in Salt Lake in January, where more tests will provide additional information about his condition.

The Fosters have racked up close to $70,000 in medical bills, but, Foster said, they have been blessed with friends who are trying to help them raise money.

"We feel pretty fortunate. We've been able to raise, with the help of folks, about $5,000 so far. That's been a great help to us."

One of Brett's friends, Cory Gifford, has gone the extra mile, Foster said. "She carried a jug around and hit the students and teachers (at Montrose High) up."

That raised about $600, and Cory raised an additional $400 through other efforts.

Foster said the MHS swim team also held a swim-a-thon fundraiser, and the speech team donated the proceeds from snack bar sales at its tournament. Additionally, the Montrose NJROTC is selling 8-foot skiffs built by nautical science students for $80. To order a skiff, contact Scott Rizzo at 249-6636, ext. 4393.

Other friends are planning a benefit auction and celebratory dinner for Brett from 6 to 10 p.m. Jan. 31 at the Holiday Inn. They are seeking donations of items and services.

"We need items donated; anything you want to donate," organizer and family friend Shanna Baker said.

Baker is being aided by auctioneer Mark Covington and DeNece Crowe, a friend who suggested the fundraising auction.

To help out or to donate auction items, contact Baker at 323-6276. She said Re/Max Alpine View will be a drop site, but to contact her with questions.

Additionally, a benefit account for Brett has been set up at Montrose Bank.

Foster said his family is benefitting from more than financial support — they are grateful for others' thoughts and prayers, as well as to the sheriff's office, which covered his time off, and to the high school for helping Brett with missed work.

"It makes us feel pretty good. Montrose is grown up and gotten big, but we've still got people who care. There's still a lot of good people around here," he said.

Foster also urged anyone with questions about Chiari-1 to contact him or his wife, Susann. "Chiari-1 is a very under-diagnosed condition. The more people know about it, the more people they're able to diagnose."

The person with the most understanding is Brett himself, who recently turned 16. "I asked what he wanted," Foster recounted. "He said, 'I don't need anything, Dad. I got the best present. I'm here and I don't have headaches anymore.'"