Caroline Murray/Recorder staff Nine-year-old Ethan Allen is shown Thursday next to bottles he is collecting to raise money for and spread awareness of mitochondrial disease, with which he was diagnosed more than a year ago.
By CAROLINE MURRAY
FULTONVILLE -- Nine-year-old Fultonville resident Ethan Allen is a Mito Warrior.
A year and a half ago he was diagnosed with mitochondrial disease, a rare genetic disorder that affects cellular production of energy, causing patients to feel less energetic than their peers and leaving them with a weakened immune system.
His symptoms include severe asthma, autism-like features, organ failure and muscle loss.
Despite his challenges, his mother Jamie Allen said he is nicknamed "The Mito Warrior" because Ethan is determined to live a normal life and will not give up on his fight to find a cure.
Last September, family members organized a benefit to help raise money for his medical expenses; Ethan currently sees eight specialists at Albany Medical Center.
This year, Ethan is paying it forward by giving back to MitoAction -- a nonprofit organization that provides support to mitochondrial patients and their families, and educates, advocates and researches for the cause.
"He wanted to help people like him and kids like him and decided he wanted to go to the MitoAction Walk," Ethan's mom said.
"I just thought about it," the Mito Warrior replied.
On Sunday, Sept. 14, the organization is holding a MitoAction Energy Walk & 5K in Boston to help raise money for and spread awareness of the disease.
Ethan and his family are signed up to walk as team, "Mito Warrior Platoon," and have already raised $1,020 in donations for the organization.
But Ethan is not stopping there.
On Aug. 2., he and his mother will hold a bottle and can drive at the Patty & Joe Lapan Bottle Return redemption center on Main Street in Fultonville.
Residents from all over are welcome to drop off their recyclables to help Ethan and his family raise money.
Jamie Allen said they are also planning a bake sale, with all proceeds going toward the team's expenses.
She said next year, they would like to host a walk in Fultonville to collect donations and spread awareness locally.
Although raising money is important, Jamie Allen said spreading the word about the disease is vital to school districts and even medical centers that may not be privy to Ethan's condition.
"The money from the walk brings support to the families, educates everyone on the mito disease. They (MitoAction) bring kids care packages and help to provide doctors around here with information regarding it," Allen said.
One in 2,000 children in the United States is diagnosed with mitochondrial disease by age 10.
Allen said the disease is rare, and not many people are educated about the symptoms -- including doctors and other medical personnel.
She said MitoAction holds informative meetings at hospitals to better inform staff members.
The organization also provides clinical trials for new medication and holds events such as the walk this September.
Since he was diagnosed, Jamie Allen said Ethan has endured three major life-threatening attacks stemming from his condition.
Allen and her husband, Robert, decided not to tell Ethan about the severity of the disease.
"A lot of information about the disease can be scary for a 9-year-old to view," she said.
Still, Ethan tries to live the life of a normal 9-year-old.
He is shy, but said he has dreams of growing up to be a firefighter -- just like his father.
He cannot play contact sports, but enjoys basketball and baseball with neighborhood friends.
Allen said her son often gets tired, and has to take breaks. His friends are understanding and will sit out with Ethan as he rests up.
At school, Ethan said, he tries to educate students about his illness.
For a science fair project, Ethan created a poster board about his journey with the disease.
The condition is genetic, and his 7-year-old sister Madison is currently going through medical tests to determine if she has the illness.
Jamie Allen said she may also carry the disease, but has not received any medical treatment. At 29 years old, she is not worried about herself. Right now, her focus is on her children.
Currently, she is training for the 5K marathon the MitoAction organization is hosting, along side the walk in September.
"I may not finish first, but if Ethan can conquer mito, even if it takes me a while to finish it -- I want to finish the 5K because he has struggled with so much," she said.