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Fundraiser to aid Bethpage boy with rare disorder

Despite the symptoms of Teacher-Collins Syndrome, Bobby Nawrath

Despite the symptoms of Teacher-Collins Syndrome, Bobby Nawrath is a typical 6-year-old. Here, he follows along during his first-grade math lesson at Central Boulevard Elementary School in Bethpage. (Dec. 1, 2011) Credit: T.C. McCarthy

In many ways, Bobby Nawrath is a typical 6-year-old. He goes to school, plays with toys and enjoys Disney World.

But he suffers from a severe form of Treacher-Collins Syndrome, a rare genetic disorder that left him without ears or cheek bones and an undersized lower jaw.

In the last six years, Bobby has undergone 15 surgeries, including three on his lower jaw to expand and line it up with his upper jaw. He also has a headband hearing aid to help transmit sounds to his brain.

In the next three to four years, doctors hope to shape his ears and cheek bones.

Bobby’s father, James, 39, works at a pet shop. He has medical insurance, but he says expenses quickly add up, including non-medical costs like train, taxi and parking fees for trips to his doctor in Manhattan, or for hospital stays for when Bobby undergoes major procedures. Missing work also eats away at the family’s savings.

“There are times we expected to be in the city for three days and we were in for 10,” Nawrath said. “You can’t get paid for days you don’t work.”

After hearing about Bobby’s story, Bill Murphy, owner of Murphy Construction in Freeport, said he decided to make him the beneficiary of the company’s 24th annual fundraiser, set for Dec. 4 from 1 p.m. to 5 p.m. at Freeport’s E.B. Elliot’s, at 23 Woodcleft Ave.

“I think just looking at his [Bobby’s] face, you know, when you look at him, you just have to do it. You have to,” Murphy said.

Academically, Bobby is right on schedule with the other kids his age at Central Park Boulevard Elementary School in Bethpage. His teacher, Lindsay Cohen, 25, said Bobby’s favorite subject is math but his vocabulary is also outstanding.

“In class he’s wonderful,” she said. “He’s doing really well in school. He’s just like any other 6-year-old.”

Bobby feels the same way.

However, James Nawrath added that if Bobby notices someone staring at him, he makes funny faces at them. “We were on line in Disney last week and I saw this little girl staring at Bobby. She started laughing,” he said. “I went to get Bobby to tell him, ‘It’s OK’ and he was making faces at her. That’s why she was laughing.”

The upcoming fundraiser has earned Bobby some attention from local media outlets and he’s very excited to be on television to be famous, like, he says, Lightning McQueen from the “Cars” movies.

Donations for Bobby Nawrath may be sent Robert J. Nawrath SNT c/o Bill Murphy, 92 Hampton Place, Freeport NY, 11520.

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