Man with muscular dystrophy raising awareness of disabilities
Sometimes you need to do something crazy to get people's attention, Matt Eddy explained.
Eddy, 31, from Lynn, Mass., has Duchenne muscular dystrophy. He cannot breathe without a respirator. He hasn't been able to walk since he was 10. Twisting his wrist slightly is as much as he can move his hand.
He is traveling from Boston to California on his electric wheelchair with his ventilator strapped to its back.
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Eddy, 31, and his friend Ron Steenbruggen, 52, passed through Lake County on Thursday during their cross-country jaunt. Eddy wheels ahead while Steenbruggen bikes behind. They are hoping to raise awareness and funds - awareness for people like Eddy who have serious physical disabilities and funds for a community in which they can live.
Eddy and Steenbruggen want to set up Matt's Place, an apartment complex designed so people with serious disabilities can live independently. It would cost about $3.5 million for such an enormous project, but Steenbruggen said it's better than forcing people into an institution.
"To live independently at home costs one-third of the expense of putting someone in an institution," Steenbruggen said.
"To put one person with a serious physical disability in an institution costs between $1 million and $1.2 million a year."
Eddy said living independently also ensures a higher quality of life.
So far the trip has raised $1,500 for Matt's Place through their Web site, www.officialmattsplace.org
Steenbruggen lives in Salem, Mass. He is a respiratory therapist who met Eddy when he installed his trachea tube eight years ago. They became friends almost immediately. Steenbruggen let Eddy move in when his mother could no longer take care of him.
Eddy needs someone with him 24 hours a day in case something goes wrong with his ventilator, so Steenbruggen is always nearby.
When Eddy needs the mucus suctioned from his throat, Steenbruggen helps. When Eddy needs to eat or shower, Steenbruggen helps. He has biked behind Eddy for almost his entire trip.
Steenbruggen's daughter, Danielle, Andrew Walsh and Eddy's two Boston terriers travel with them in a van. They help run errands and set up camp for the night. Setting up camp can take as much as two hours because of the medical equipment Eddy requires. They jokingly call his tent the ICU, short for intensive care unit in medical parlance.
The group set off from Boston on June 30 and are expecting to reach California by November. They have traveled over the Catskill and Berkshire mountains, through rain and heat. One of their tents, not Eddy's, was blown away by the wind Wednesday when they camped in Perry Township night.
But Eddy said he loves it because he's living on his own terms and not in an institution.