Freedom needed for man in wheelchair

By Aaron Jahn

Stephen King was heading out with his friends Ken and Janice Taylor to a movie not too long ago, when a sudden thump as his muffler fell off his van made him and his friends aware that his 1995 Dodge van was truly on its last legs.

For many people, this would be an irritation or even a mild stressor if they needed to replace their car, but for Stephen, it signified the end of his independence.  You see, Stephen has Duchenne Muscular Dystrophy.  He has been in a wheelchair since he was 12.  At 35 he is one of the oldest surviving people in Ontario with this debilitating disease, the life expectancy is between 18-20 years.  He needs an accessible van with all the machinery that entails.  A van, that brand new, would cost between $40,000 and $50,000.

His mother Diane and father Richard, known to most as Ma and Pa, aren’t able to afford a new one.  The old Dodge was purchased six years ago at an auction from Community Living.  It has seen better days and would cost more to repair than it is worth.  Asking for help is very difficult for them.

 

Stephen King's van has seen better days, with the exhaust system falling apart and the body deteriorating at a rapid pace, fixing the van is no longer an option for the King family. Family friend Janice Taylor is working hard on a fundraiser to get King his independence back.

Enter Taylor, once Stephen’s Personal Support Worker until a workplace injury took her ability to do the job from her, and a long time friend who married into the extended family of friends that the King’s have.  Taylor decided enough was enough, that Stephen needed a safe, reliable ride so that he could have as much independence as he could conceivably have.

“Steve wanted to treat my husband to a movie and the muffler fell off and I said ‘I’ve had it’ between that and the spiders I found in the car that day, it was horrible,” said Taylor.  “I just saw the need and I went for it, I don’t really know how to do this, but I’m doing my best.”

She stepped forward and began a campaign to raise enough funds to buy Stephen a vehicle that would not only meet his needs, but provide a safe journey as well.  To date she has hosted an open house in her own home and they have managed to raise just under a thousand dollars only the first step in their quest. The next step is a fundraising dinner in January.

Taylor has been pounding the pavement to raise awareness of the event and seeking sponsors and businesses that would be willing to donate door prizes and raffle items to help them raise money.  A hard task at any point, but a task made doubly hard with the twin factors of a struggling economy and the Christmas season.  But many have stepped up to the plate and are doing what they can to help the King’s.

“It’s extremely hard to raise money right now, one; it’s the holiday and two; it’s for an individual, not for a charitable organization,” said Taylor.  “I’ll go in to a store and show them what we’re doing and they’ll say that I’m the fifth one that day, I used to work in retail and I remember people coming in, but I didn’t realize how high those numbers had become.  I realize that the economy sucks, but we have until the end of January to find sponsors and sell tickets.”

Taylor becomes emotional when speaking about Stephen and his need for a new vehicle, and fought tears when she explained the kindness of local businessman Sean Fenton, owner of Fenton Roofing,   who after finding out the dire need of a new roof on the King home, stepped forward and replaced the worn and broken shingles.

“My husband makes maybe half of what he used to make before the downturn in the economy, I mean we’re lucky our house is paid for we can make it through there, but the extraordinary expenses are difficult,” said Diane “It’s astounding for us (the roof) we didn’t expect anything like that.  We were planning on doing it, it needed to be done, but when my husband got sick in March, he had a heart attack, we had to put it off and meanwhile we’ve had so much rain this year.  There’s no way you can pay somebody back for that.”

“I have to admit that Sean Fenton gave me hope, hope that there are good people out there who are willing and able to help.  And he’s a quiet guy, he doesn’t want interviews he didn’t do this for publicity, he just said ‘I have my health and he doesn’t,” said Taylor.  “They did a fantastic job, I can’t thank them enough.”

Taylor speaks with cautious optimism about raising the money, admitting that she was feeling overwhelmed at the enormity of the task.  She felt a true ray of hope when Fenton Roofing stepped forward to help the King’s.  She hopes that she will be able to overcome the difficulty of raising funds and help for Stephen, who as an adult, has fewer options available to him than he would as a child.

Taylor and the Kings are working with the March of Dimes to get some funding to offset the cost of the vehicle, and as a resident of the county with no access to public transit and limited access to specialized transportation he is near the top of the list, but that only covers a portion of the cost.

“They (March of Dimes) can give up to $15,000 and he’s high priority because he lives in the County, he has zero transportation, it’s too hard to get him to medical appointments,” said Taylor.  “They also won’t do the work to make it fully accessible on a vehicle that’s more than two or three years old.”

Stephen sits quietly, observing Taylor and his mother as they speak about his needs.  He was robbed of his voice when they had to give him a tracheotomy to help him breathe a number of years ago, while he can speak, his voice is not even a whisper and his family and friends have become adept at lip reading.  His only real form of communication with the outside world and in detail with those close to him is with a computer that he is able to manipulate with his head.  He has written a letter to share his thoughts and feelings, and this is some of what he had to say.

“I’m a pretty normal guy who enjoys music and a good book, I really enjoy going to the movies and to the mall, I could spend a whole day in the theatre watching movie after movie if you let me,” King writes. “I love being active in the community; it really takes my mind off of my own situation.”

“I have been pretty much housebound since last winter, the only times I did get out were for medical appointments and risked the odd trip to the movies,” wrote King. “With the recent failure of the van’s exhaust system, using it is no longer an option due to exhaust fumes entering the interior of the van.”

A long time member of the Knights of Columbus and the Squires, King tells of how the last event he was out of his house for was a celebratory event for the Squires.

“My last major function, I was able to attend was the celebration of ’50 Consecutive Years of Service’ for the John Brazil Circle 1385 McGregor,” King writes.  “I was also the very first Squire in this circle who was physically challenged.  I was fortunate to receive excellent support from my fellow Squires and Knights and councillors, which allowed me to fully participate in many events in the community and with the Squires program across Ontario.”

The fundraiser is being held January 28 at the Knights of Columbus Hall in McGregor. Tickets are $25 per person.  If anyone wishes to donate to Stephen’s van fund, the Kings and Taylor have setup an account at TD Bank, donations can be made at any TD branch to: Branch 2640 account 6274435.  Anyone wishing to buy tickets can call 519-713-8981 or 519-564-2581

 

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