Mattie Stepanek's Letter From MDA Summer Camp

July 24, 2002 - When fire fighters Fill the Boot for “Jerry’s kids,” one of the things they’re doing is helping to support MDA summer camp. I want to tell you a little bit about that special place.

MDA summer camps are for children from the ages of 6 to 21 who have neuromuscular diseases. I have one of the muscular dystrophies called dysautonomic mitochondrial myopathy, which causes me to use a power wheelchair, a ventilator and supplemental oxygen. Obviously, there aren’t many camps that I could go to with all this special equipment. But MDA summer camp is there for me, as it is for thousands of other kids each summer.

During the week of MDA camp, each and every camper has a personal counselor. These counselors are so special! They’re like best friends and angels at the same time. They help us with the regular stuff that parents usually do, like eating and washing and getting dressed and suctioning.

And they help us with the fun stuff that makes MDA camp special, like swimming and boating and wheelchair football and talent shows and hanging out with other kids. Some counselors will even help you spray Silly String all over the girls’ cabin and not give you away! (Not that I’ve done this.)

A lot of fire fighters come to MDA summer camp as volunteer counselors. Others visit camp on the VIP day, and let the kids enjoy seeing all the fire equipment.

In my life, fire fighters I’ve met through MDA are some of the most generous people I’ve known. I have a lot of respect and love for fire fighters because they put other people’s lives before their own. Even though they’ve seen some hard things in their jobs, they remember to “play after every storm,” which is my personal philosophy. They’ve offered me their friendship and made my life richer.

At the MDA camp I attend -- Camp Maria in Leonardtown, Md. -- we have a tradition on the last day of camp. We all write down wishes on pieces of paper and put them in a basket attached to a bunch of balloons. The basket floats up in the sky and the counselors tell us that our wishes become stars, shining brightly with hope.

I believe in hope. And I believe in those wishes because they’ve come true for me! MDA summer camp will always be one of the best times of my life. I’m very, very grateful for everything fire fighters do to make it possible, by raising money, by volunteering at camp and by offering their friendship.

See you at camp!

Mattie Stepanek is the 2002 MDA National Goodwill Ambassador, and a personal friend of IAFF General President Harold Schaitberger. It was Mr. Schaitberger, Jerry Lewis and Ed McMahon who introduced Mattie on the 2001 national MDA Labor Day Telethon. For years, Mattie’s “balloon wishes” at camp were to have his poetry published, to talk peace with former President Jimmy Carter and to have his poems read on “The Oprah Winfrey Show.” All those wishes have come true, and he’s published three best-selling books of poetry. In addition to his work for MDA, Mattie has become a national spokesperson for peace and courage.

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