Ottawa boy raising funds, awareness for his rare genetic disorder | Local

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Drew Hood is 14 years old and will go blind within 10 years.

The Ottawa boy’s sight has been diminishing since he was 5 years old. He now has no peripheral vision, is night blind and has trouble distinguishing colors. What vision he has, will shrink to nothing by his early 20s.

Drew likes to read. Harry Potter and other works of fantasy are his favorites.

The boy’s afflictions do not end with his eyes.

Drew also was born deaf. Implants behind his ears allow him to hear, if the noise level is relatively quiet, but nevertheless sounds come across as robotic and buzzing. He has no sense of balance or spatial orientation. His muscles act up, his digestive tract doesn’t run smoothly, his heart can race and his joints give him problems.

Usher syndrome is to blame, a rare genetic disorder.

Anyone with less moxie would have been laid low by these ailments, but Drew is up and running.

To raise awareness of Usher syndrome and generate money for treatment and research, particularly into eye implants, Drew will be running 26.2 miles, the length of a marathon, in installments between Aug. 22 and Sept. 16, as part of Own the Equinox, a program to fight the syndrome.

When the autumnal equinox occurs Sept. 16, sunlight begins fading, which represents what the syndrome’s sufferers face. To donate to Own the Equinox, visit Drew’s page at: www.classy.org/fundraiser/1049774.

“I love to run, but sometimes I need someone with me to help keep me from going off to the right or left,” Drew said.

Drew has been on school swim and track and field teams, which he noted are his “passions.” This August he becomes a freshman and plans to participate in cross-country running. He also has been on speech team, which gave him the acting bug.

However, his long term goal is not the stage, but the sea. He wants to attend the University of Florida and become a marine animal trainer. He was inspired by a trip to Sea World.

Drew’s mother, Tracie Steider, likes the cut of her son’s jib.

“People don’t really see anything visibly wrong with Drew, but on paper it looks like he can’t do anything. Drew will even get frustrated and say, ‘Mom, stop telling me I can’t do things.’ The fact he’s mainstreamed in school is impressive,” Tracie noted.

Drew’s father, Mark Steider, admires his boy’s peerless work ethic.

“Drew works twice as hard as other kids. We push him to be independent, to not rely on others, but do it himself,” Mark pointed out.

Drew’s disabilities have been his unwanted companions since birth, so he knows little else, but he has turned them into assets.

“I’m OK with it. Sometimes I wish I was like other people, but I’m used to it. It makes me stronger. People expect me not to be the greatest, so I push to prove myself to them.”

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