PLATTSBURGH - Even though one in 10,000 children worldwide are born with CHARGE syndrome, Mackenzie Bola of Keeseville has found not many people are aware of the genetic birth defect.
Bola herself was unaware of the syndrome which can affect a child in a vast number of ways, in several areas of the body, from heart defects, to eye problems to nasal blockage. However, when her son Jacob was born June 11, 2008, doctors informed her he had been born with CHARGE.
"He was affected in all areas," explained Bola. "My son, he had hearing loss, vision loss, brain damage as a result of the nasal blockage. He wasn't able to breathe out of his nose."
Exactly one month later, Jacob died as a result of his condition.
"My son passed away so I kind of wanted to do something good out of the situation," Bola said.
Bola is now planning an inaugural 3-mile walk to help raise money and awareness for CHARGE. Although her son was one of the main reasons for putting together the walk, Bola said he wasn't the only reason.
"Not a lot of people have heard of CHARGE, but I was actually surprised to hear that two other children in this area have CHARGE," she explained. "So, that was another incentive of why I wanted to do [the walk]."
The walk will be held Saturday, June 13, at the Terry Gordon Memorial Bike Path on the former Plattsburgh Air Force Base, beginning at 10 a.m. The fee to enter is a $10 donation with additional donations being accepted for the CHARGE Syndrome Foundation.
The 501(c)(3) nonprofit foundation's mission "is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management," according to the Web site www.chargesyndrome.org.
Though there is no known cause of the syndrome, Bola explained, it has to do with the way the parents' genetics.
"The way [the genes] come together," Bola said, adding "You don't have to be a carrier of it to conceive a child with CHARGE."
Not all cases of CHARGE are terminal, noted Bola, who said "most children are significantly delayed when they have CHARGE," often being affected cognitively.
For more information about the CHARGE walk, contact Bola at 834-9496 or e-mail firstname.lastname@example.org.