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With Help from My Friends

By DEVIN ARGALL

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My name is Devin Argall. I’m 16 years old and live with Duchenne muscular dystrophy (DMD). DMD is a debilitating genetic disease that progressively weakens muscles. Most boys with DMD end up needing to use a wheelchair around 12 years old and eventually have trouble breathing or develop heart disease, which leads to a shortened life; about 25 years. There is no cure and until last year, there was no treatment. The FDA approved Exondys 51 last September, which will treat about 13% of DMD cases. In February, the FDA approved Emflaza to treat symptoms of DMD, but it only slows the disease progression.

Living with a disease like DMD or any other serious condition or disability can be very difficult for kids to deal with. The effects often extend far beyond the physical ailment and the visible symptoms of the condition. Every area of life is affected to some extent. Kids may feel like it’s difficult for them to fit in and may even think they won’t be able to experience life as fully as everyone else. I found that surrounding myself with good people has helped me out a lot.

When I first started school, I had about the same physical abilities as my friends. I remember having a lot of fun on the playground with all my classmates. We would swing, go down the slides, climb the jungle gym, and play games. My favorite game to play was kickball. I may not have been quite as strong or fast as the other kids, but I was still able to play well enough that I was just as much involved as anyone else. As I grew older, my muscles began to get a little weaker and it became difficult to continue to do the same things with my friends that I enjoyed so much.

Even though I was still a young kid, I had to start thinking about things a little differently than my friends had to. It wasn’t easy to go hang out with them at their houses or go to all the same places we used to go together, such as the park, beach, or sporting events. I had to think about the obstacles that could get in my way or present a dangerous situation for me. The obstacles are common and not always considered by people who don’t face the same challenges. I lost the ability to take stairs on my own and almost every house we’d go to had stairs of some sort. I had to be very careful on slippery surfaces like icy sidewalks and wet floors. I even had to pay close attention to avoid tripping hazards like objects on the ground or cracks in the sidewalk that could cause me serious injury. As time went on, my friends and I grew apart. Looking back on it, I understand why. They had complete independence. I required planning and special accommodations. It became difficult for them to always have to adjust their plans to fit my needs. Friendship had always been easy and developed naturally. As time went on, it required some effort.

I’ve made many new friends over the past few years. I met a lot of them through my involvement in various organizations and through activities outside of school. They are all different ages, come from a variety of backgrounds, and live both locally and throughout the country. The friends I’ve made have helped my development in many ways. I feel truly comfortable expressing myself naturally because I know they accept me exactly as I am. My friends love to hang out with me and are willing to do whatever it takes to make sure I am able to participate in the same things they enjoy doing. My active social life and the feeling of complete acceptance has helped me develop a lot of confidence in myself and my abilities. I’ve even learned how to cope with the effects caused by DMD and now view my life, not bound by the restraints others may believe exist, but instead live without any restrictions preventing me from pursuing the things that I enjoy. I’m passionate about living life, continue to work toward achieving my goals, and always remain excited about the endless possibilities the future holds.

I’m very thankful for my friends, family, and all the other people in my life. I believe the friendship and support I’ve been blessed to have in my life, is a huge reason for my well-being. Everyone needs a support system, but I think it’s especially important for kids living with a disability to have friends to encourage them through adversity. I understand what it’s like to have to make new friends and I know it can even be scary sometimes. I’d like to share a few ideas to help kids like me develop a healthy social life by becoming more involved in activities with others.

1. Always be yourself and know that you are amazing just the way you are!

2. Don’t ever stop doing what you love or pursuing what you want in life.

3. It’s important to communicate your ideas and emotions. People might not know what you’re interested in or that you’d like to become friends.

4. Be an advocate. Share your story with others to increase public awareness, fundraise for the cause, and inspire others. I’ve become very involved in advocacy, which has provided me purpose far greater than my own. I believe I’ve contributed a lot to the community through my work and have also met many wonderful people because of it, including some of my best friends.

5. Ask for help in finding support and meeting new people. School counselors can be a great resource.

6. Check with organizations that represent the community of people living with a condition similar to yours for suggestions on ways to become involved. The Muscular Dystrophy Association, American Cancer Society, and Juvenile Diabetes Research Foundation are good examples.

7. Seek out organizations that promote an adapted sport or physical activity you enjoy. A few of my favorites are Special Olympics, myTeam Triumph, United Special Sportsman Alliance, and The Miracle League.

8. Join a club at school focused on something you find interesting. My school has many options including computer science, photography, and business clubs. I even belonged to a school sponsored Minecraft club a couple years ago!

9. There are a number of organizations aimed at providing a healthy environment for kids to enjoy. Big Brothers Big Sisters of America, Boys and Girls Clubs of America, and 4-H offer wonderful opportunities. My personal favorite is Young Life. You can also check with the YMCA, your local public library, or church for ideas.

10. Explore the internet to find reputable groups to join online. Facebook offers endless possibilities.

Josh and Devin

Lastly, please know you can count on me. I’m here for you and more than willing to help you explore other options based on your unique situation. You can contact me through the DevinStrong Facebook page if you’d like to share your ideas, experience, or just to introduce yourself and say hello. I’d love to hear from you. You’ll always have a friend in me!

DEVIN ARGALL

Devin Strong is a nonprofit company registered in the State of Wisconsin, created to share Devin’s story with the world and in doing so, work toward a cure for duchenne muscular dystrophy. Devin, along with his family advocates for the well-being of everyone in the duchenne muscular dystrophy (DMD) community through pursuit of a cure, accessible treatments, affordable healthcare, and by contributing toward advancing public awareness and education.

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