July 6, 2010

Boy with big heart, rare disease asks for and gets help, hope

Every day, someone learns how rare they are, how unique. Sometimes that rarity is the happenstance of having a disease few do. Tyler Fehsenfeld has Duchenne muscular dystrophy, a disease only about 15,000 boys have.

It's the type of diagnosis that leaves little hope for the sufferer, family and friends. It is the type of diagnosis that often makes us turn inward, focusing on finding the best options for our connection.

But, sometimes, a family is energized by joining with other families for support. They work together, using their connections, to raise money for a better life for those with the disease, for research for a cure, for somthing that will make a difference.

So Tyler is lucky. His grandfather, the publisher of Michigan's largest daily, home-delivered newspaper, and grandmother sponsored something wonderful recently.

An event orgazined around the local premiere of "The Twilight Saga: Eclipse" raised funds for research on the disease. The movie's opening on June 29 was a chance to learn more about the disease and do good while having fun.

A June 30th update from Dan Gaydou:
"Generous friends continue to come through for the PPMD cause. As of this afternoon, the total raised is $139,840; $3,120 more just since last night. Thank you everyone for your support and God bless you."
The Grand Rapids Press published an article online that will help you learn why I called Tyler a boy with a big heart, a boy who may never celebrate a 30th birthday. The western Michigan news operation followed up with "Mission of 'Twilight:Eclipse' movie premier party was clear: End Duchenne (You'll find a video, photograph and more about the event, organized by Anessa Fehsenfeld, Tyler's mom.)

Gaydou asked his Facebook friends to help promote that event in hopes that many would attend the premiere.

(Sorry, I'm late - it is one of the posts I forgot to publish. But you still can contribute and at least be aware of the disease. You can donate online or send a check  payable to Parent Project Muscular Dystophy to Dan Gaydou at 155 Michigan NW, Grand Rapids 49503.).

The boy's father once was the Newspaper In Education coordinator at The Flint Journal.

The family has tried many things. In 2006, the family rocketed into the spotlight when the federal government delayed delivery of Deflazacort, a medicine approved in other countries but not in the United States.  A U.S. specialist had prescribed the drug.

"I'm choosing to give this drug to my son that a doctor says he needs, and my country says he can't have it," Anessa Fehsenfeld is quoted The Grand Rapids Press in an April 5, 2006, article. "As if the diagnosis isn't bad enough, and then you have this to deal with."

The options for treatment are few. The Internet has helped many parents to connect, including the Parent Project Muscular Dystrophy site which offers ideas, hope, support and more.

Still, it takes funds for that and for research. That's where events like Run for Our Boys and this western Michigan fund-raiser give help and increase the amount of hope.


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