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Brothers run marathon to raise money to research rare disease

By Kevin Maki, KECI Reporter, kmaki@keci.com
Published On: Jul 14 2013 05:55:41 PM MDT
MISSOULA, Mont. -

Three little boys with a rare and devastating neurological disease crossed the finish line with two other brothers, other family members and supporters.

They ran to raise money for research on Giant Axonal Neuropathy, or GAN.

The youngsters are from Pinesdale.

Levi Spencer is 7.

His twin brothers, Aaron and Alan are 5.

Missoula County Sheriff's Cadets helped the youngsters cross the line in style.

They call the young boys GAN warriors,for their fight against Giant Axonal Neuropathy.

GAN is robbing them of all movement, and could kill them before they turn 20.

"We're trying to raise money for a cure," said their mom, Charee Spencer,"that will help save their lives."

The Sheriff's Cadets are helping raise money for research.

Human clinical trials for a gene therapy cure that could halt progression of the disease are scheduled to start in the fall.

The brothers' family is trying to raise $150,000 to help find a cure.

Ross Jessop is a  Missoula County Sheriff's deputy, and the boys cousin.

"I think they've raised 80% of that," said Jessop, "every dollar helps."

The GAN warriors have a fan club.

You wouldn't know for a minute with their personality and their awesome character that they were hindered by this disease," said Paige Pavalone from the Missoula County Sheriff's Department.

Crossing that line was a dream come true for big brother Levi.

"I want my legs to get strong like my dad," said Levi.

"I'm working my muscles and making my legs strong," said young Aaron.

It takes a lot of energy to run a marathon.

Alan was hungry when he crossed the line.

For more information on Giant Axonal Neuropathy, log onto www.GANwarriors.com or check out Hannah's Hope Fund.