Fundraiser for boy with rare disorder nets $30G
Bobby Narwath, 6, of Bethpage has Treacher-Collins Syndrome, a genetic disorder that left him without ears, cheek bones and an undersized jaw. Mentally he is a typical 6-year-old and here is bored by his first-grade lesson on tallying. (Dec. 1, 2011) Credit: T.C. McCarthy
A fundraiser held Sunday for a Bethpage boy born with a rare genetic disorder brought in $30,000, according to the organizer.
The money will go toward medical and other expenses to help care for Bobby Nawrath, 6, of Bethpage, who suffers from a severe form off Treacher-Collins syndrome. The disorder left him without ears or cheekbones, as well as an undersized lower jaw.
The fundraiser is an annual event hosted by Murphy Construction in Freeport, which each year also donates construction labor or funds to a local family in need. This year he chose Bobby, and owner Bill Murphy said it was the second-best year in the event’s 24-year history.
“I just thought there was a tremendous amount of people it just kept growing,” he said. “We got a great response the day after as well,” Murphy said.
Murphy said he is still receiving donations.
The event, held at E.B. Elliot’s, a waterfront-restaurant on Woodcleft Avenue, included music, food and a visit from Santa Claus. Bobby rode atop the shoulders of a bagpiper who played. Baldwin’s Evergreen Landscaping also donated a trip to Disney World in Orlando, Fla.
“It was ridiculously generous and touching and heartwarming to take time out of their lives and out of their pocketbook to help Bobby,” his father, James Nawrath, said. “He loved the bagpipers and he loved that everyone said ‘Hi’ to him. They made him feel special and very comfortable.”
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