Ravalli County Coverage

Feb 23, 2013 8:43 PM by Brin Merkley - KPAX News

Plunge raises $35K for Bitterroot boys with rare disease

HAMILTON - Community members came together Saturday to help three young brothers fighting a neurological disease diagnosed in less than 100 people worldwide.

Droves of people dressed in bathing suit costumes made their way to the first GAN Warrior Polar Plunge in Heironymous Park to help three brothers, 6-year-old Levi and 4-year-old twins Aron and Alan, fight a rare and life-threatening condition called Giant Axonal Neuropathy or GAN.

Plunge organizer Erica Jessop says she was amazed by the large amount of people who showed up for the jump.

"The smiles, the faces of the kids and just people are really excited about it, they are really happy that they can help, they know it means a lot, they know that it's a big deal and they know what it means to Levi, Aron And Alan too so, very cool."

She says the response from the community is astounding.

"It's to show them that they're special, and they matter," she said.

With the help of another fundraiser in New York, the goal is to raise enough money to send the boys to gene therapy trials as a chance to hault the progression of the disease. The cost is about $500,000.

The boys' mother, Charlee Spencer, says it is exciting to see so many community members, strangers and familiar faces take the plunge.

"It means we can get their cure hopefully and be able to help them get better," she said.

Jessop says this is only the beginning.

"They need continued help, they need continued sponsorship. This is going to be an annual event most likely and we are fortunate enough to do that so we're gonna need your help from here on out, it's not over today."

Saturday's event raised $35,102. The deadline for raising their goal amount is April 30.

Click here to learn more. Here's KPAX's photo album from the day.

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