Wednesday, October 29, 2008

Wheelchair user rolls across USA to raise funds for accessible housing

From The Daily Item in Lynn, Mass.:

LYNN - Matt Eddy, 31, (pictured) has had a dream of seeing the country all of his life. Every six months, he would get the idea in his head, but dismiss it as a dream that would never be.

But Oct. 25, that dream became a reality when the Lynn resident arrived in Long Beach, Calif., after a 119-day trek across the country. But there's one major difference between Eddy's trip and most cross-country journeys: Eddy rolled across America in his wheelchair.Eddy and his support team left Boston on June 29 and have been traveling ever since. He is the first person to ever travel across the country in a wheelchair.

Eddy, who has suffered from Duchenne Muscular Dystrophy since birth, has been confined to a wheelchair since the age of 10 and relies on a ventilator to breathe.Ron Steenbruggen, a respiratory therapist at the Shaughnessy-Kaplan Rehabilitation Center in Salem, rides his bike behind Eddy and provides care for Eddy both on and off the road.

Another team rides in a van a bit ahead, scoping out places to stay and the next day's route.The van holds clothes and camping equipment, as well as a charger for Eddy's wheelchair and ventilator.

"If I can take care of him on the side of the road in a tent, then there's no reason why people like Matt can't live alone and not in an institution," Steenbruggen said.

Steenbruggen and Eddy agreed there were two difficult aspects of the trip."The mountains because it drains his battery in his chair," Steenbruggen said. "And the cold up in the mountains. We always worry about the equipment malfunctioning in the cold."

Eddy is also very susceptible to temperature change and covers himself with a blanket when the temperature dips below 75 degrees.

Steenbruggen said the dangers of living in an institution far outnumber those involved with living in a house. Bedsores and pneumonia are just the beginning, but when coupled with a complete lack of mental stimulation or activity, Steenbruggen said it's nearly unbearable.

He also noted the danger of "superbugs," germs that are able to withstand antibiotics, which he said are very common in health care settings. He said 100 percent of people with severe disabilities pick up this type of bug while in an institution and almost 30 percent will die from them.

Eddy met Steenbruggen about eight years ago when he was a patient at the Shaughnessy Center after Eddy received a tracheotomy. Upon his release, Steenbruggen was supposed to go home with him for about a week to get him settled. He hasn't left since.

"They said he was supposed to live six months," Steenbruggen said. "That was eight years ago. And he's healthier now than he was then."

Steenbruggen, who is married and has three grown children, stays at Eddy's house every night to ensure his safety, in addition to his working at his full-time position at Shaughnessy. He bought and renovated a house to fit Eddy's needs, but that house was recently foreclosed and auctioned off.

"We don't even know if he has a house when we get back," Steenbruggen said.

The pair decided to embark on this cross-country trip to raise awareness about the situation of people with severe disabilities and to raise money for Matt's Place, a non-profit started by Eddy and Steenbruggen to help keep Eddy in his house and out of an institution. As of right now, money is low.

"Now, it's very, very short," Steenbruggen said. "Every time we get this low, something happens. We're going minute to minute right now. But whatever's
supposed to happen, happens."

Their dream is to build a housing complex that is designed for severely disabled people.

Steenbruggen said that this plan would cost about $3.5 million. And while that might seem like a lot, consider the following: Steenbruggen says that to keep a person in Eddy's situation at home would cost about $275,000 a year, but to keep just one severely disabled person in an institution costs about $1 million a year.

"Matt's not so different," Steenbruggen said. "He's a human being. He needs a little help with some things, but that's it... There are a million things people like Matt can do."

To donate to Matt's Place visit Donations can also be mailed to P.O. Box 305, Lynn, MA 01903.