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Local boy raises money and awareness on rare disease

FULTONVILLE -- Ethan Allen is a Fultonville boy, and at not even 10 years told, he's your average kid fighting a not so average battle. He loves playing baseball and basketball with his friends. But Ethan suffers from stage four Mitochondrial Disease.

"he'll be tired and he'll not feel good or be in pain but you never see it on his face," says Ethan's mother Jamie Allen.

Ethan was diagnosed last year, but started showing symptoms at just six months old. He has a weakened immune system, lack of energy, and can't regulate his body temperature. Right now there is no cure for the disease, and last year it was his friends and family that helped with the cost of his medical bills. 

This year he's paying it forward by raising awareness for the disease. He's having a bottle and can drive. They've already raised plenty. They've well exceeded their goal of $1000 and now they have a new goal of $2000, one you can help him reach.

"The community has really wrapped it's arms around this," says Patricia Lapan with the Fultonville Redemption Center.

Ethan is collecting bottles and cans and bringing them to the Fultonville Redemption Center. All of the money raised will be donated to Mitoaction, an organization that helps educate everyone about the disease, including doctors and hospitals so they can better diagnose it. They also provide information on research projects and new medication for the disease.

"Now we're up 1,488 dollars, so August second we have a bake sale and a bottle drive hopefully we'll surpass 2,000 by then and maybe even get to 25 hundred," says Lapan.

One in four thousand babies are diagnosed with the disease, and knowing the warning signs can be life saving. 

"It is definitely vital, we have to always educate people because his symptoms, he could go into a seizure, he can go into organ failure, and he could have a lot of medical conditions that can happen if someone doesn't fully understand the warning signs of someone that has Mitochondrial Disease," says Allen.

Ethan and his family also will be walking in the Mitoaction walk in Boston in September. They don't plan on stopping their fight there. 

"We plan on when we come back in September, we're actually going to start our own walk , and we're starting to plan that where we have a Mito Action walk in this area," Allen says.

If you would like to help Ethan you can bring cans and bottles to the Fultonville Redemption Center during business hours. They will be holding a can drive and bake sale on Saturday August 2nd from 9am until 5pm.

If you would like to learn more about the disease click here.

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