Fundraiser To Benefit Long Island Boy With Rare Disorder
FREEPORT, N.Y. (CBSNewYork) — A fundraiser will be held this coming weekend for a Long Island boy, who was born with a rare disorder and gone through quite the ordeal.
Bobby Nawrath was born with no cheek bones, no ears and a recessed lower jaw due to a condition known as Treacher-Collins syndrome. His father, James, says Bobby has had more than 15 surgeries despite the fact that he just turned 6 years old.
1010 WINS’ Sonia Rincon Speaks With Bobby’s Dad
“He’s going to need many, many more surgeries. So this helps offset the cost of going into Manhattan and paying for… surgical deductibles and paying for your room and board when you have to go into the city,” James Nawrath told 1010 WINS’ Sonia Rincon in reference to the fundraiser.
It’s an uphill battle for the 1st grader, but his dad says he is a trooper. Each surgery is a long and rather painful procedure and one of his recent procedures was a jaw distraction.
“They actually break his jaw and install rods and pins into his jaw and we twist the pins every day to give separation to make the jaw bigger and to bring the bottom jaw out further, which in turn opens up his trachea and esophagus from being blocked by the recessed jaw,” James Nawrath said.
The fundraiser for Bobby will be held at EB Elliots in Freeport on Sunday, December 4 from 1 to 5 p.m. There will be dinner, dancing and raffles. Tickets are $20 at the door.
Those with questions or wanting to make a donation can contact Bill Murphy at 516-546-2196. Checks can be made payable to Bobby Nawrath SNT c/o Bill Murphy 92 Hampton Place, Freeport, NY 11520.
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