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Apr 6, 2017 6:13 PM

Northfield teen with rare genetic disease holds fundraiser to join life-saving clinical trial

NH1.com

NORTHFIELD — Brittany Cilley has lived with a rare genetic disease for the last decade. But at just 18 years old, she has a chance at a new life, and she needs her community's help to get it.

“I really never thought this was even going to be a possibility,” Brittany said during an interview with her parents.

When she was 8 years old, Brittany was diagnosed with Wolfram's Syndrome. It's a genetic disease that only affects one in 500,000 people worldwide.

She's the only person in New Hampshire diagnosed with Wolfram's.

The condition manifests itself in several different symptoms, including hearing loss, optic atrophy and diabetes insipidus which is a rarer form of diabetes that causes an imbalance of water in the body.

Brittany started experiencing these symptoms when she was six, and she is now completely blind.

“I remember probably during middle school I could go to bed one day and wake up the next morning and not see the same," she recalled.

Wolfram's Syndrome is a progressive disease that affects both children and adults, but it affects everyone differently. Doctor's predict Brittany will only live until she's 30 years old.

"You don’t want your child to die, and that’s what we’re facing, to be honest, and the fact that she might have the opportunity to live a future and her dreams that she wants and go to college and have a career and have a life is huge," said Dawn Cilley, Brittany's mother, getting emotional.

Both Dawn and Jon Cilley have been dedicated to giving Brittany the best life possible. Part of that has included annual trips to St. Louis for the last five summers.

“They would run tests on her and track the progression of the disease on her," Dawn said. "We came home in July with hopes that they were on the track to hopefully finding a cure or something to stop the progression.”

Those hopes became a reality last October, when the family got an email that doctors in St. Louis would be starting a clinical drug trial.

Researchers at the Washington University School of Medicine believe a drug called dantrolene will slow or even stop Wolfram's progression. Dantrolene is a muscle relaxant already used to treat cerebral palsy, multiple sclerosis and muscle spasticity.

Brittany will be the fifth patient to start participating in the trial, one of 24 total. The family said they didn't hesitate to volunteer for it.

“I figured it would benefit people in the future, but I never thought it would ever benefit me,” Brittany said.

“She was more than willing to go through it for others. We never thought… I don’t think we ever thought this day would come," Dawn added.

However, volunteering for the trial comes at a heavy burden for the family.

Brittany will have to make a minimum of ten trips to St. Louis in the next eight months. In total, it'll cost the family $30,000.

After a lot of consideration, the family decided they couldn't do it alone, and that's how they decided to host a fundraiser.

The big event is scheduled for Friday night from 6-9 p.m. at the Beane Conference Center in Laconia. It'll feature catering from Contigiani's, a DJ, raffles and a silent auction featuring donated items like artwork, a designer purse, handmade jewelry, luggage and more.

The Cilley's said they're overwhelmed by the support they've received from all across the Granite State.

“[It's] a bit overwhelming. We weren’t even sure how it would go, then all of a sudden it launched into its own thing," Jon Cilley said.

Some tickets for the event are still available and can be purchased online. The family has also set up a GoFundMe to help support the cause.

Any funds raised above and beyond the $30,000 will be donated to the Snow Foundation for Wolfram's Syndrome Research.

The Cilley's are grateful for all the support they've received so far and hope that this trial will give Brittany a chance at a long, full life.

Brittany said living with Woflram's hasn't always been easy, but the hope of a drug trial has kept her positive.

“It was definitely hard. Thankfully, I have really close friends and family, and all the support really helped," Brittany said. "But even when times would get rough, I could always just get through it if I reminded myself that [participating in a trial will] help. It may not help me, but it’ll help someone, and that’s how I got through.”

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