If you Google “Duchenne muscular dystrophy,” the first reference that comes up states “Survival is rare beyond the early 30s...”

All the more reason for 31-year-old Matt Eddy of Lynn, Mass., to drive his wheelchair from Boston to California. Afflicted with the illness from birth, Matt’s limbs are paralyzed and a battery-powered ventilator is required for breathing. But Matt’s mind is sharp and spirit strong, and he’s determined to make the trip of a lifetime while life is still his to live and savor.

Eddy and his support team rolled through Ashtabula County Tuesday and Wednesday. Ron Steenbruggen, a respiratory therapist, rides his Schwinn behind Eddy and cares for him both on the road and off. An advance team composed of Ron’s daughter, Danielle Steenbruggen, and Andrew Walsh travel in a van and set up camp for the night’s rest and nourishment. Village Green Campground in North Kingsville provided a site for the team at no charge Tuesday night.

Steenbruggen said they are making the ride to raise awareness of people like Eddy, whose disabilities are so severe that institutionalization is seen as the only option. However, as Matt Eddy is proving with his coast-to-coast ride, these people are capable of incredible feats with the right kind of support.

“If I can take care of him in a campground anybody can take care of him,” Steenbruggen says.

Steenbruggen first met Eddy as a patient at the ventilator rehabilitation center where he worked. After Matt received his tracheotomy, he was released to go back to live with his mother, but she couldn’t handle the burden. The only other alternative was an institution; Steenbruggen intervened.

“He’s got way too much life in him to lock him up in a chronic care facility,” Steenbruggen says.

That was nearly eight years ago. As Eddy’s caregiver, Steenbruggen rehabilitated a house to accommodate Eddy’s unique needs and trained others to care for him. That house, financed with an adjustable rate mortgage, has since gone into foreclosure because of the spiraling insurance, interest and tax burden of homeownership.

Matt’s need for housing brings up the second reason for the ride: to raise money for Matt’s Place, an apartment complex that would facilitate independent living for people with severe disabilities.

Steenbruggen estimates it will cost $3.5 million to build what they have in mind. “Land alone in Massachusetts. would be $1 million,” he says.

While that sounds like a huge amount of money, Steenbruggen says it costs the taxpayer between $1 and $1.2 million annually to care for just one seriously disabled person who’s placed in an institution. He estimates that same person could be cared for in an apartment complex for less than a quarter of that figure.

“Health care in America is no longer about the patient, it’s all about the money,” Steenbruggen says.

Steenbruggen says Matt gets only $600 a month plus $19 in food stamps. The system is designed to push the seriously disabled into institutions.

“A one-bedroom apartment in Boston costs at least $1,200 a month,” Steenbruggen said.

There’s also the quality of life issue. Steenbruggen says once a patient is placed in an institution, he is usually bedridden and has virtually no access to the world beyond that bed. There’s very little motional and intellectual stimulation.

“They’ll be in a bed for the rest of their lives with five crappy TV channels to watch. That’s it,” he says.

He says while there is a huge amount of investment to provide community resources for the developmentally disabled, the seriously physical disabled citizen gets only 97 cents for every $3.94 spent on the former population. Steenbruggen hopes the apartment complex he wants to build will become a protype for other communities to use in meeting this population’s needs with more humanity and economy.

They have a long way to go to reach California and their financial goal; the trip has raised only $1,500 toward the apartment complex.

The trip costs them about $100 to $150 a day. Gasoline for the support van and generator is a big potion as that. Food and lodging – they try to stay in a hotel with handicapped amenities at least once a week – account for the rest of it. They survive on donations and the kindness of people they meet along the way.

“People are a lot kinder throughout the county than what you’d expect,” Eddy said.

He’s had numerous print interviews, appeared on an Erie TV station and hopes to get broadcast media coverage in Cleveland and Toledo. Eddy designed and maintains a Web site with information about his mission and trip, www.officialmattsplace.org.

Eddy talked about the trip for about four years before things finally fell into place for them to make it. They left Boston June 30 and expect it take until November to reach their destination.

He is making the trip in an Invacare electric wheelchair powered by two marine batteries. Another battery will power the ventilator for up to nine hours; a backup battery kicks in when that one dies. They recharge the batteries at night using a Honda generator.

There are no spare batteries, no spare parts. Eddy relies upon Walsh, “Mr. Fix-It,” to keep the rig going places it was never intended to go.

The wheelchair’s tires, new when they left, are worn and will be replaced when the new tires catch up with the team between Cleveland and Chicago.

They average 30 to 40 miles a day. “Some days 20, some over 40, it all depends on the rain, weather.”

Steenbruggen says Eddy does best in hot weather. The illness makes him very susceptible to cold, and Eddy covers up with a green blanket as he rides when the temperature is below 75 degrees.

“If it’s 95 degrees and 100 percent humidity, he’s happy,” Steenbruggen says.

Mountains, particularly the Catskills, and the lack of accessible roads have provided their biggest challenges thus far. They plan to travel routes 20 and 6 through Ohio; in congested areas, Steenbruggen walks next to the wheelchair rather than ride his bicycle.

Steenbruggen says any kind of travel is a challenge for Matt because both Matt and the ventilator he’s on 24/7 must be moved as a unit. He did manage to fly with his friend to Florida, but the airlines damaged the wheelchair. Despite all the traffic and discomfort of the weather, it beats being bedridden.

“He’s going across country and (other seriously disabled persons) are lying in bed,” Steenbruggen says.



Online: www.officialmattsplace.org.