Bethpage toddler struggles to cope with rare disorder

A Bethpage family is struggling, both emotionally and financially, to help their son cope with a rare genetic disorder. Kelly Nawrath's 2-year-old son Bobby has Treacher Collins Syndrome and is due to

News 12 Staff

Oct 26, 2007, 12:36 AM

Updated 6,114 days ago

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A Bethpage family is struggling, both emotionally and financially, to help their son cope with a rare genetic disorder.
Kelly Nawrath's 2-year-old son Bobby has Treacher Collins Syndrome and is due to undergo his sixth surgery in two weeks time.
"He was delivered and right away we knew that something was wrong," Nawrath said. "He was having trouble breathing."
Bobby was born without cheek bones, ears or a jawbone. He is forced to breathe through a trache and eat through a feeding tube.
Bobby's father, James, said the upcoming surgery will hopefully give his son a jawbone.
"The hope is that when the jaw grows out he can possibly eat and breathe normally," he said.
The emotional stress on the family has been great.
"We'll try to teach him every way we can that he is just a little different. Not weird like other kids say, just a little different," Kelly said.
The toddler's surgeries are mostly covered by insurance, but out-of-pocket co-payments and other medical costs total $10,000 thus far. In addition, Bobby will undergo several cosmetic surgeries, which are not covered by insurance.
The Nawraths are determined to provide for their son's medical needs as best they can.
James said, "He needs these surgeries, so we going to find it one way or another to make it happen."
To watch complete interviews with the parents of a child born with Treacher Collins Syndrome, go to channel 612 on your iO digital cable box and select iO Extra.
Related Information:To donate to Robert Nawrath, born with Treacher Collins Syndrome, Bobby's Web Site or Robert NawrathSNT c/oMaryellen Nawrath209 W. 22nd St.Huntington, NY 11743


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