Community Supports Boy Suffering From Usher Syndrome - FOX 35 News Orlando

Community Supports Boy Suffering From Usher Syndrome

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MEDFORD LAKES, N.J. - A large crowd was on hand to support a young boy fighting a rare disease on Sunday.

Supporters turned out for the second annual ‘Help Henry See and Hear’ family event in Medford, New Jersey. The afternoon was filled with swimming, jumping and even a cookout.

We first introduced you to 6-year-old Henry Norton a few days ago as he took Fox 29 around his house

The light hurts his eyes, so he has to wear sunglasses, and his vision is going quickly.

He's deaf and relies on hearing aids, but none of that stops him at all.

"He's just like any other kid, he just can't see and hear. He's just like any other kid. He can do anything," said his mother, Kim.

Henry lives with Usher syndrome, which is a genetic disorder that causes a steady loss in one's hearing and vision.

Henry was born deaf and is going blind because of his medical condition.

And that's why his family and friends say it's more important than ever to help fund research to find a cure.

"Awareness is access. If you are aware of people's needs, you meet them where they are, it would be a better place," said Kim.
"Everybody should be able to read something, if it's in braille. Everybody should be safe without curbs falling over, and everyone should have an interpreter to be able to sign."

This fundraising team is working to raise $30,000 for groups that help people like Henry. Funds raised on Sunday will benefit the Coalition for Usher Syndrome Research in Massachusetts and similar groups. Last year, Henry's group raised $26,000.
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