August 8, 2000

REGARDING ONE CHILD'S PERSPECTIVE ON MDA SUMMER CAMP

MDA camp season is drawing to a close, with reports coming in from across the country about the great times that campers and volunteers had.

For those who are unfamiliar with the program, MDA summer camp takes place one week every summer. It's designed for kids affected by any of the neuromuscular diseases in MDA's program, with special activities created to suit their abilities.

Each camper is assigned a volunteer attendant, a buddy who provides care on a 24-hour-a-day basis during the week. It's a tough job but immensely rewarding for the volunteers whose hearts have been permanently touched by these special youngsters.

One very special youngster who attends MDA summer camp at Camp Maria in Leonardtown, Md., is 10-year-old Matthew Stepanek. He has mitochondrial myopathy. So does his mom, Jennifer. Matthew, also known as Mattie, has lost three siblings to the disease.

Mattie is something of a writing prodigy. Recently he wrote a touching and poetic fable about the MDA camp experience from an imaginative young camper's perspective, as follows:

"How the Stars Came to Be at Camp Maria"
by Mattie Stepanek, age 10

Mattie Stepanek, 10, has mitochondrial myopathy.

Once upon a time there was a group of very special children. They laughed and cried and played and slept like other children. And yet this group of children was special in a unique way.

For one thing, this group of children knew all about some words that other children never even heard of. Words like Duchenne, Becker, spinal muscular atrophy, Friedreich's ataxia, Charcot-Marie-Tooth, limb-girdle and mitochondrial myopathy.

They also knew words like braces, wheelchairs, bipap machines, nebulizers, steroids, muscle cramps and life expectancy.

Another thing that made this group of children very special was that they understood about feelings. They understood very intense feelings. Feelings like fear, sadness, frustration, anger and loss. And feelings like hope, trust, optimism and resiliency. What was really neat was that some of these children didn't even know what the words describing these feelings meant, but they understood what the feelings were like, because they lived with those feelings every year.

Well, one day, a long time ago, yet not so long ago at all, something very, very special happened for this group of very special children. Some very special grown-ups, who were something like magical angels on earth, got together and decided that unique children needed a unique place to get together. They needed to get together to get to know each other, and they needed to get to know about being independent, and they needed to get to know how much fun life can really be. The grown-ups decided that the children who knew the big words and understood the intense feelings would spend a week at Camp Maria, doing nothing but celebrating the gift of life.

When the children arrived at Camp Maria for the very first time, they didn't know quite what to expect. They were told that Camp Maria was all about "Friends Helping Friends." And across the week, they went swimming and boating, and they did arts and crafts and made little race cars, and they played wheelchair football and baseball. There was singing and dancing. There were camp fires. There was karaoke. In fact, by the end of the week, these children who weren't quite sure what to expect looked back at their week at Camp Maria and already began to miss all the activities and people. They all understood what "Friends Helping Friends" really meant.

When it was almost time for these unique and special children to leave for home, the magical angels asked them each to say or write a wish onto a little piece of paper. They were told that the little pieces of paper would be put into a basket tied to balloons. The basket would then float up into the heavens, and even if the wishes didn't come true in the exact way they were wished for, the magic of wishing would bring hope to the children.

The grown-ups told the children that they would know that their wishes were bringing hope to them, and to the whole world, each time they looked up into the sky of a clear night. They told them that each wish became a special star that shined brightly in the sky, and in the hearts of all children and grown-ups who believe in hope. The children were very, very excited.

Some of the children wished for things like a new puppy, or Pokemon cards, or a really cool CD. Some of the children wished for things like a new wheelchair that had a motor, or a really long straw to make drinking easier, or a laptop computer. Some of the children wished for things like world peace, or to have their books of poetry published, or for a baby brother or sister. And even though they didn't write it down, all of the children wished in their hearts that one day, all children would still be special, but that no child would ever have to be special for knowing about big words like muscular dystrophy, or for understanding intense feelings like worrying about the future.

When all of the little pieces of paper were placed into the balloon basket, the children cheered and smiled as they watched their wishes slowly drift up into the heavens. And suddenly, something wonderful happened … all of these unique and special children could feel the hope of a thousand stars twinkling and shining all around them. They knew in their hearts that even though they would face many gray clouds in their lives, they would always remember to play after every storm.

This group of very unique and special children went home with a spirit that was even stronger than when they first came to Camp Maria. And every summer since then, more and more unique and special children, who know the big words and understand intense feelings, keep coming to Camp Maria to celebrate life. And all of the children who come to Camp Maria to celebrate the gift of life learn about "Friends Helping Friends." They learn about bringing out the best in themselves and in other people. They learn about how to feel the stars all around them that symbolize wishes and hopes. And most of all, they all understand that something good is happening to their spirits, and they live hopefully ever after. And that is the story of how the stars came to be at Camp Maria.

We're grateful to Mattie and his mom for allowing us to reproduce these moving words.

It costs MDA $450 to send a child like Mattie to MDA summer camp. If you're touched by Mattie's poignant words and wish to support next year's MDA camp program, please consider phoning in a pledge during our upcoming Jerry Lewis MDA Telethon airing Sept. 3-4.

Or, if you prefer, make an online donation now or at any time convenient for you.

On behalf of campers everywhere who live "hopefully ever after," thank you for your support.

With every best wish . . .

The Ross Report Archive