FULTONVILLE – Ethan Allen is a typical 9-year-old. He loves going to local sports games, playing with his friends and playing baseball and basketball.
Unlike other kids, however, the fourth- grader sees a minimum of eight different medical specialists every three to six months because he has a chronic genetic disorder called mitochondrial disease.
Ethan was diagnosed with complex four mitochondrial disease at age 8 after spending years with chronic illness that began when he was an infant.
To get the diagnosis, doctors had to do genetic testing and a muscle biopsy. The disease was causing a variety of problems, including asthma, hearing loss and muscle weakness.
Mitochondrial disease affects the body’s cells and leads to a host of symptoms. Ethan is on a vitamin therapy to help treat the illness.
Ethan wants to help others like him who are dealing with the disease. He and his family have been raising money for MitoAction, an organization that aims to improve the quality of life for people who are affected by mitochondrial disorders.
The Fultonville resident will take part in the Sept. 14 MitoAction Energy Walk and 5K in Boston with his team, the Mito Warrior Platoon. His mother, Jamie Allen, will run in the 5K portion, while Ethan and other members of his family will take part in a 1-mile walk.
The family set a fundraising goal of $1,000, and the Allens now have reached $1,360.
“He is a warrior because he is helping everybody,” Jamie Allen said.
To help raise money, Ethan’s grandmother, Mary Ellen Francisco, said she would shave her head if Ethan raised $1,000.
Jamie Allen said once the wager had been made, and people who knew the family became aware of it, it took only two weeks for the amount raised to go from $400 to $1,000.
Francisco has since shaved her head.
Jamie Allen said as a reward for Ethan reaching his next goal of $2,000, she and her husband, Robert, will get tattoos in honor of Ethan. The family hopes it can reach more than $3,000 by the time of the race.
Despite his limitations, Ethan plays baseball and basketball with friends.
He wants to be a firefighter and a mechanic when he grows up, just like his father.
“We allow him to be a 9-year-old,” Jamie Allen said. “We don’t put him in a bubble. We have to let him live.”
Ethan’s friends understand his needs and often will sit with him when he needs a break while playing with them.
Area organizations have gotten involved in helping Ethan raise money, including the Fonda Speedway, Amsterdam Mohawks and local restaurants and businesses. Local law enforcement has joined in, collecting bottles and cans to help the Allens reach their goal.
Patricia Lapam of the Fultonville Bottle Redemption Center said donations have been coming in for Ethan regularly, and there are donation jars for people who want to leave money for the fundraiser.
“Everybody has really stepped up,” Lapam said. “It’s really been a community effort.”
Bottle donations can be made at the Fultonville Bottle Redemption Center. The center will host a special collection event for Ethan on Aug. 2 from 9 a.m. to 5 p.m.
About one in 2,000 children in the United States will develop mitochondrial disease by age 10, according to the Boston-based MitoAction.
To donate to Ethan’s Mito Warrior Platoon team, go to www.mitoaction.org.