When asked how Duchenne muscular dystrophy (DMD) impacts her son, Garin, Rebekah Stepp puts it in terms many families can relate to. “Many parents complain that their child is difficult to wake up in the mornings. Others complain that their kids fuss over what they will wear to school. Still others complain that their kids won’t eat their breakfast,” says Rebekah. “In a normal family, the morning routine can include any number of negative things; however, all of that pales in comparison to having a child who CANNOT get up in the morning, who CANNOT feed themselves, who CANNOT dress themselves, who CANNOT brush their teeth.”
She goes on: “Our day starts early, and we understand that Garin wakes up each day feeling as tired or more so than we feel at the very end of a rough and stressful day. His day begins that way and worsens from there.”
Even though having a child with a neuromuscular disease is both physically and mentally challenging, Rebekah says that Garin has a wonderful attitude about life, and that attitude helps her. “As a family we try to go about life as usual and give Garin the most normal, yet fun-filled life that we can. When facing each day with a fatal disease, you certainly learn not to sweat the small stuff and to appreciate each day,” says Rebekah. “If we think ahead at the many challenges that Garin and we will face, it becomes overwhelming. So we try to focus on today. We know that if we enjoy the moments of today, we can handle the challenges of tomorrow when they get here.”
It’s an attitude the family adopted shortly after Garin’s diagnosis. Rebekah explains, “When he was younger, we noticed that Garin’s walking was different, and that he could not run. We pointed this out to his physician a few times; however, it wasn’t so severe at that stage and was dismissed as delays. At age three, when we mentioned it to his physician, it was as if a light bulb came on and she knew it was some type of muscular issue. As we began to learn more about Duchenne, we realized that the future was very bleak. It is a diagnosis that no parent wants to hear.”
Nevertheless, Rebekah and her family’s goal is to give Garin the best life possible. “We learned to live for each day. Whether he lives to be 20 or hopefully 95, it will be the best 20 or 95 years that he can have!”
MDA is a key part of that plan. “We appreciate that they are working to find a cure and better treatments for our kids, and we especially appreciate all the effort that goes in to summer camp for these kids.”
We recently caught up with the 13-year-old Shamrockstar and asked him more about himself.
Who are your favorite people and/or pets? My favorite pet is my service dog, Ranger. We also have a cat named Izzy and another dog named Ace. I really like animals. My favorite people are my family.
What is your favorite subject or activity in school? My favorite subject is science.
What do you like to do in your free time? I like to build with Legos and play on Xbox.What are three things most people don’t know about you? I want to go to England, I collect Hot Wheels cars and my favorite food is sushi.
What is your favorite thing about MDA? MDA Summer Camp.
What is your favorite memory from MDA Summer Camp this year? Making floats on Lowe’s Home Improvement sponsor day.
What do you want to be when you grow up and why? I want to be an architect so I can design accessible buildings.
How do you defy your limits and live unlimited? Having fun!
What is your favorite part of MDA Shamrocks season? I’m on them!
Why do you think people should support MDA? MDA helps kids like me.
Help find cures with #MDAShamrocks today!