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"It ends up helping that I've been through hell and back with a lot of this stuff," he says. "It becomes such a motivating force. You want to steer people from the holes you've ended up in."
He passes on information about doctors, about insurance, about drugs, about depression, about raising the money it takes to find help and answers.
And this, he says, seems to be his calling. The moral support now exists for people like him. But there's still no centralized national or international fund-raising effort to create the foundation needed to assist families with huge medical expenses associated with very rare deforming diseases like his.
Through numerous telephone calls, Internet letters and several trips to support group meetings around the country, McGuire has positioned himself as a de facto spokesman for people around the world with rare deformities who fall through the cracks of current medicine.
After the Ripley's spot brought him notice, McGuire also began a Web site, www.handycapped.com, which includes the Ripley's segment, video of his foot surgery and information and links to other sites where people can find information about similar diseases.
In a few weeks, McGuire and his mother will be traveling to a meeting of Klippel-Trenaunay experts in Minnesota.
The main goal, they say, is to learn more about fund raising and about establishing trust funds.
"Moral support is one thing, providing actual financial and medical support is another," he says. "That's my goal: to somehow help create something out there that can actually help people live better lives."
His mother says, "I think Gordon is someone who from a very early age felt that helping people was his calling. He's rediscovered that calling. And I believe that's why he's still alive. I think that's why he's so full of life again."
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