Family raises money for disease awarenessPosted: Updated:
A New Rochelle family is raising money to raise awareness about a rare disease their son is suffering from.
Joey Mileti, 4, was diagnosed at age 2 with an extremely rare mitochondrial disorder. At the time, doctors gave the toddler only three months to live ? but two years later, he?s still alive.
Mileti?s life isn?t easy. He is the only person in the world with this form of mitochondrial. Because of the disease, Mileti?s body gets little energy from food and oxygen, causing damage to his brain cells. That, in turn, complicates his motor functions and will ultimately lead to organ failure.
Only one in 4,000 children in the United States will develop mitochondrial disease. Doctors say treatment is in limited simply because of a lack of research and funding.
The Mileti family hopes to change that. They decided to use baseball as an incentive for people to donate money for research for the disease. The family auctioned off a block of tickets to a Mets game ? and ended up raising $75,000.
Mileti?s mother, Gabrielle, says the biggest victory so far is the respect she?s gained for life. ?Not one second of the day is taken for granted,? she says. ?Not one.?
TheJDM fund for Mitochondrial Research