Lynn parents set up fundraiser for son afflicted with rare syndrome

LYNN – Michelle and Michael D’Agostino are neophytes when it comes to planning a fundraiser but they’re charging ahead to raise funds for the CHARGE syndrome foundation, which they are unfortunately way too familiar with.”CHARGE syndrome is a genetic syndrome that basically neither me or my husband have any features for,” said Michelle D’Agostino. “The doctors said it’s just a random thing for (Landon) to have it.”The extremely rare syndrome manifests itself differently in each child but the basic modus operandi is a pattern of birth defects that occur in about one out of 10,000 to 15,000 births. D’Agostino said Landon suffers from hearing loss, a heart condition, partial facial paralysis and he has a feeding tube but D’Agostino considers him lucky.”He’s on the milder scale,” she said. “There’s not really a mild or severe level kind of scale but ? some children are severely handicapped, deaf and blind. Landon has hearing loss but his vision is good so far.”A hearing aid also largely corrects his hearing, she added.It has been a big learning curve for the family that had no idea their son was afflicted with the syndrome until the days after he was born. D’Agostino said she had a perfect pregnancy and while they could see that something was wrong with their new baby they had no real answers or explanation until he was nearly 6 months old.The D’Agostinos still spend a lot of their time at doctors’ offices with check ups and monitoring but Michelle D’Agostino said things are leveling off and her hope is that someday Landon will outgrow some of his difficulties.”The feeding tube is our main focus,” she said, adding the family hopes he will be able to eat on his own soon.In the meantime the family is hoping to raise some funds to offset medical bills and attend a conference in Arizona on CHARGE syndrome where D’Agostino said they will also get to meet other families struggling with the same issues, which they have yet to do. Because CHARGE syndrome is so rare, the D’Agostinos haven’t found anyone in this area afflicted.”We’re excited to meet other families,” she said.The CHARGE it for Landon fundraiser will be held Saturday at 6:30 p.m. in St. Michael’s Hall, 25 Elmwood Ave. It will include food, a disc jockey for dancing and plenty of fun, D’Agostino said. And raffles.”We have tons of raffles,” she said. “We’re drowning in raffles, it’s awesome how generous people have been. It should be a great night.”Tickets are $20 per person or $200 for a reserved table of 10 and are still available. For more information contact Sue Carroll at 781-248-9803 or [email protected], or Lynda Fields at 617-548-5496 or [email protected]. For more information on CHARGE syndrome go to www.chargesyndrome.org.Chris Stevens can be reached at [email protected].