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Feb 8, 2013 7:38 PM by Akeam Ashford

Boy lives with Usher Syndrome Type-1C

There's a little boy in Youngsville who is living with a vary rare condition. Hunter Faucheaux is living with the Type-1 gene of Usher Syndrome. The syndrome affects one out of every 20 people with French/Acadian decent. Hunter had a 25 percent chance of getting the disease from his parents, who both had to carry the recessive gene trait.

According to the National Institute on Deafness and Other Communication Disorders, usher syndrome is the most common condition that affects both hearing and vision. The major symptoms of Usher syndrome are hearing loss and an eye disorder called retinitis pigmentosa, or RP. RP causes night-blindness and a loss of peripheral vision (side vision) through the progressive degeneration of the retina. As RP progresses, the field of vision narrows-a condition known as "tunnel vision"-until only central vision remains. Many people with Usher syndrome also have severe balance problems, causing children the inability to walk early on.

There are three clinical types of Usher syndrome: type 1, type 2, and type 3. In the United States, types 1 and 2 are the most common types. Together, they account for approximately 90 to 95 percent of all cases of children who have Usher syndrome. Hunter has the type-1 syndrome that caused him deafness in both ears from birth, he suffers from balance problems that make it hard to walk, and in the future he'll have decreased night vision before the age of 10.

Dr. Jennifer Lentz, who is a lead researcher for the LSU Health Sciences Center says for cases in the United States, about 1 in 1,000 newborns are born with hearing loss.

Hunters hearing condition has been fixed by cochlear implants, which allow him to hear normally. His mother Elise Faucheaux says, "getting the implant at such a young age is one way of defeating usher syndrome."

The Faucheaux's say they have raised Hunter like they would any other child. "We didn't dwell on it every single day, but we stay informed about the situation, and try to help out other people as much as we can."

Hunter's dad says he looks forward to playing with his son now that he has learned to walk, but says there is some pain that remains. "The pain comes with knowing that he didn't do anything to deserve what he got."

The Faucheaux's got a big surprise yesterday when Hunter said his name for the first time. "This week he says his name and "thank you" all in one week," says Blair Faucheaux.

The family has struggled with the thought of having another child, but Blair Faucheaux says, "I would trade Hunter for Hunter without the syndrome, but I wouldn't trade Hunter with the syndrome for a normal kid."

You can follow Hunter's progress at: http://www.angelicears.blogspot.com/.




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