July 26, 2001

REGARDING DISPATCHES FROM MDA SUMMER CAMP 2001

MDA summer camp season will soon be drawing to a close, and the reports that have been coming in mark this as a special year for the program. But as anyone who has participated in MDA summer camp will tell you, every camp season is special in its own way.

Following are some recent goings-on at MDA camps across the country:

Grammy-winning singer-songwriter and MDA volunteer Jana Stanfield participated in MDA camp in Meridian, Texas. There she performed some of her uniquely inspirational songs and taught songwriting to some of the older campers. Jana also participated in an MDA video shoot, that produced footage which may be used for a music video about the MDA camp experience.

Singer-songwriter and MDA camp volunteer Jana Stanfield

In June, MDA National Goodwill Ambassador Sarah Schwegel, 8, had an unfortunate accident that resulted in a broken leg. The good news was that Sarah, who lives in Kirkwood, Mo., was able to be transferred from a plaster cast to a fiberglass one in time for her MDA summer camp session in Chesterfield, Mo. The fiberglass cast gave her the mobility she needed to participate in camp, which is one of her favorite activities of the year. As usual, Sarah had a great time.

Also in June, devastating floods in Houston and Beaumont produced an unexpected benefit for campers in Burton, Texas: an extra day at camp. Although the camp itself wasn't flooded, the trucks and buses needed to get the campers home were trapped in flooded areas. Parents were notified of the extra day layover while MDA staff scrambled to find alternative transportation.

Another problem was that counselors for another organization's camp session were shortly due to arrive, meaning there would be a shortage of cabin space for one day. MDA campers were consolidated from 17 cabins to 11 to make room for the new arrivals.

"In a way, it was a lovely experience," said Houston MDA Health Care Services Coordinator Anne Swisher. "I always believe you see the best in people when you work in challenging situations. It was a lovely community effort. And all the kids were like, 'Yay! We get another day at camp!'"

Camp is a special experience not just for the campers, but also for the parents, and not just because it provides a much-needed one week respite from caregiving duties. The other benefit to parents is the joy of seeing how the young campers' spirits are affected by this special week.

Here's a recent letter from a mother in South Portland, Maine, about the impact MDA camp has had on her son:

My name is Suzan Norton and my son Michael has been attending camp for eight years. He was only 4 when we found out he had muscular dystrophy.

Since he was 10, he has used a wheelchair. We now perform almost all daily living tasks for him. This has not disabled his spirit.

MDA camper Michael Norton

For many of the children you will see at camp, they rely solely on their parents, which often leads them not to experience who they are aside from their parents. Michael has been able to experience who he is apart from me and that is the most important contribution camp gives to my son.

When a child is dependent on someone to bathe, dress, toilet, and even write for him, it is often difficult for that child to figure out his purpose in life. This camp is a place where magic happens every day.

It is a place where a child can do anything because it is a place filled with hope and determination. The campers boat, fish, and even play wheelchair hockey with modifications made by the counselors.

Sometimes the psychological impact of having a disability is quite often worse than the disability itself. At camp, children are always treated with respect, never asked inappropriate questions, and truly encouraged to have fun.

To visit camp means that you will never leave the same. Many of the counselors come back year after year because they have forever been changed by the experience. It is full of caring individuals and enthusiastic campers. Children should not be consumed by their disability or illness. They should be free to be children first.

The following letter was received from a mom in the Chicago area, Theresa Forthofer, who has myotonic dystrophy and whose son is affected by the same disorder.

When I received information in the mail regarding the MDA Camp at Lake Hastings, I was very excited but hesitant. I enjoyed wonderful camp experiences as a child and hoped my children would have the same opportunities.

However, Ryan is a very anxious child who resists any new experience. We talked about it as a family and all decided -- Ryan included -- that he was ready to give it a try. From beginning to end, his experience, and ours, was overwhelmingly positive!

One week before camp Ryan started becoming very anxious. And I must admit, so did I. He started insisting he was not going to camp and I even began to think he wasn't ready. The very next day, we received a phone call from the cabin leader who talked to both Ryan and me. She talked about what camp would be like, asked Ryan a few questions and asked him if he had any questions. Although Ryan didn't have much to say, the call got him excited and made him feel like he would know someone at camp.

Five days into camp, I received the phone call I had been dreading since he left. Ryan was having a very difficult morning and wanted to come home. I felt strongly that since he had made it five days and there were only two remaining, Susan should work with Ryan and convince him to stay. From what I understand, by lunchtime he was back in camp mode and having a great time.

I couldn't wait to see him on Saturday. We arrived when the camp photo was being taken, and it was quite a sight! After the photo, Ryan came over to greet us with big hugs. I knew immediately he had a truly positive experience.

Ryan introduced us to a lot of the volunteers and other campers, and knew them all by name. That may seem like an insignificant achievement, but to me, that says a truly personal connection was made.

Ryan did things at camp he had never done before. Most importantly, he gained confidence and self esteem!

I hope the volunteers and staff involved know what an influence they have on the kids at camp, and their families!

We're extremely grateful to parents like these who take the time to let us know how important the "magic" of MDA summer camp is.

For those of us at MDA, these heartening messages can only have the effect of strengthening our resolve to make the MDA summer camp experience a priceless, unforgettable time for youngsters affected by neuromuscular diseases.

With every best wish…

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