Editor’s Note: Our summer intern, Zack Peterson of Lutz, spent the last week of June working as a camp counselor at Muscular Dystrophy Association summer camp. His camper, Justin Scull, was from Zephyrhills.
By Zack Peterson
It’s a good day when you can walk on your own two feet, when you can get up on your own in the morning, walk to the mirror and ready yourself for the day’s upcoming events in the glass reflection.
For you and I, that’s a good day.
But for a child with Muscular Dystrophy, a good day is anything but. A good day is not falling down in school; a good day is brushing your teeth on your own; a good day is not feeling the effects of a degenerative neuromuscular disease tear at your bones.
A good day is just making it through the day. Twenty-four hours a day, 365 days a year, children with Muscular Dystrophy everywhere must learn to cope with the burdens of life, instead of living it. Many don’t have the luxury to walk, take care of themselves, even operate in everyday situations that you or I might find commonplace.
Most of us don’t even know. We have no idea how lucky we are to have two functioning legs. We have no idea that children with Muscular Dystrophy are diagnosed every day in our own communities.
What we also don’t know is how we’re helping them every day.
I had no idea how much support existed for this disease until three years ago, when my track coach introduced me to a program known as MDA summer camp.
Since 1955, the Muscular Dystrophy Association (MDA) has helped bring joy to the lives of children with MD for a week during the summertime by providing them with an unforgettable camp experience.
MDA supports more than 80 camps nationwide and helps countless children build experiences that will last a lifetime.
My journey with MDA summer camp started those three years ago at the Rotary’s Camp Florida in Brandon, a haven for campers from around the area that’s offered its facilities for the past 12 years. There, I met some of the most courageous kids anyone could have the opportunity to meet.
They’re just like you and I — normal people looking for what inspires them most in the world. As it turns out, they’re a gem of inspiration for everyone who attends MDA camp, whether they’re a counselor or a camper.
MDA summer camp puts you in a unique one-on-one position as the counselor of a child with MD; essentially, you’re their caretaker for a week.
For some children who still have the ability to walk, this means watching over them; for others who have limited mobility or need wheelchairs to move around, this means helping them take care of basic bodily needs, like showering or using the bathroom. It gives counselors the opportunity to bond with his/her camper when you lift them into bed or ensure that their teeth are clean; it also gives campers the ability to trust in the world again. For those five days at summer camp, they are released from whatever hardships they struggle with on a daily basis at home.
I wasn’t sure what to expect that first year. I naively thought to myself, “How much activity can we do with children who have mobile difficulty?”
After five days of swimming, archery, pine wood derby, fishing and even swinging, I was ready to be proven wrong. These kids could do anything.
Each year I come back to MDA camp, I have an even better experience than the last.
This year, my camper happened to be from Zephyrhills. His name is Justin Scull, a 13-year-old boy diagnosed with Becker MD; he’s also the 13-year-old boy with the biggest heart I’ve ever seen.
My very first encounter with Justin was heart-wrenching almost. He was lifting his younger brother and sister up and down, laughing and smiling, bringing light and happiness to all around.
He did all this in spite of the fact that he suffers from a very serious disease that slowly wastes away at his muscles every day; in spite of the fact that one day, he could be sitting in a wheelchair at the age of 30 watching young children play freely the way he once did.
MDA camp just passed this summer, squeezing itself into the final week of June and the first day of July; and I can easily say Justin and I experienced one of the greatest weeks either one of us could possibly hope to have this summer.
Whether it was swinging together right after dinner ended or paddle-boating on the camp’s lake, Justin and I each learned a little something from each other.
We taught each other how to enjoy the little things.
It’s easy to speak about things you know nothing of, particularly when you’re just an observant bystander, but when your heart’s there — when you learn to really love what you have from these kids — it’s not just easy, it’s genuine.
My only hope is that everyone can cherish the love “Jerry’s Kids” instill the way I have. And I can only hope that you won’t just wait for it to come looking for you; I hope that you’ll reach out a hand to those in need, to those who live right in your community, to those who want love, care and compassion just like you.
Muscular Dystrophy Association
(727) 577-1700
www.mdausa.org
