September 19, 2014

Fourth-grader fighting eye disease, raising funds

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STERLING — One Sterling Elementary School fourth-grader is fighting a disease head-on and was in Westland on Saturday to speak to others about his condition and raise money for the Foundation Fighting Blindness.

Nathen DeKett suffers from retinitis pigmentosa, an eye disease inherited by mutated genes within the family. The disease causes a decline in vision until the person is completely blind.

“I had a pretty good hunch by the time he was four,” Nathen’s mother, Tammy DeKett, said about realizing her son had inherited the disease.

Tammy said Nathen would drop coins on the floor and not be able to see them, which was just one sign that he was having problems with his eyes.

“It was gut-wrenching,” Nathen’s aunt, Brenda Goodman, said about the reaction to finding out Nathan had RP.

Goodman’s father and uncle have RP, and she always remembers her father being blind from the disease.

“I never questioned it,” Goodman said. “It was normal.”

She said that it is much worse finding out that Nathen has RP because he is so young.

“They (the doctors) are saying by the time he’s 16, he won’t get a driver’s license,” she said.

Tammy added that even though it is progressing fast at the moment, the rate of degeneration can vary throughout time. She also has RP and said that during her pregnancy it began progressing at a faster rate but slowed down once the pregnancy was over.

Goodman said Nathen kept quiet about the disease until last October, when his family held a fundraiser called Bikers for Blindness, which raised more than $4,000 for the Foundation Fighting Blindness.

“Getting him involved in this has been tremendous,” she said. “I think it’s built his confidence up.”

Nathen recently spoke at a luncheon for the organization and was asked to speak at the Vision Walk last weekend.

“He’s very excited,” Tammy said. “I think it’s going to mean a lot to him.”

Nathen made a similar speech to the one he presented at the luncheon. In his speech, he introduces himself and talks about the importance of finding a cure for the disease.

“Finding a cure is real important to me because I have a lot of things I like to do. I love to play football and last year I couldn’t pass my eye exam so they weren’t going to let me play,” Nathen said in the speech, adding that he was able to get a special pass from a doctor to let him play, and he hopes he can continue playing for a while.

“My dad is such a great inspiration that I don’t think he’s as scared of what’s going to happen,” Tammy said.

To donate to the Foundation Fighting Blindness, go to www.visionwalk.org, find Michigan on the right-hand sidebar of the page and click Detroit. Then, click the “Donate” button and search for Bikers for Blindness.

“It’s just not for RP; it’s all retinal diseases,” Tammy said about the donations going to the Foundation Fighting Blindness.

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