Enrolling Your Child With A Rare Disease in A Sport

When your child has a muscle-wasting disease, but is still ambulatory, it’s hard to decide if you should sign them up to play a sport… He’s at the age where all of his friends have started playing something and he’s been asking to do the same. But we’ve been apprehensive, there are so many fears. Will he get frustrated when he can’t keep up? Will he fatigue or get hurt? Will other kids say things about him because he’s different? Do we say something to the kids, parents and coaches? And if so, what? And how? And when? Do we introduce him to something he may not be able to do for much longer? But at the end of the day, we realized that these were OUR fears, not his. 

At the end of the day, he just wants to do what other kids do. He wants to be part of a team. He wants to invite people to his games and have people cheer for him. He wants to know what it's like to get a new jersey, and cleats. He wants to go through the parent tunnel after the game and get a yummy snack. He wants to be a kid. 

And who are we to stop him? If Duchenne has taught us anything it’s that we truly are not promised tomorrow, so we are going to make the most of today.

Important things to consider/do when enrolling your child with a rare disease in a sport:

COMMUNICATION is Key: with coaches, parents, players and your kiddo

1. Connect with someone you know, (classmate, cousin) to get them on a team instead of randomly signing them up. Talk to the coach casually about your child and see their response, you will likely know pretty quickly if they would be a good advocate and support for your child in such an endeavor. This has helped us find the right people and environment for him which ultimately makes all the difference. When the season starts, he has at least a couple of friends and families that already know about his differences.

2. Don’t be afraid to speak up and offer the coaches ideas for ways your child can be involved if he does need a rest, or can’t quite keep up.

            a. He's in charge of helping get balls in the net, not running extra to get them cleaned up

            b. His water is placed near the field, or coach carries it so he doesn’t have to do extra running for a water break

            c. In certain drills, it's ok that his starting point is significantly closer than other kids. 

3. Speak with your child and let them know they may not be able to do everything, and that's ok, they still are an important part of the team. Make sure they know the importance of taking breaks when needed, and they don’t have to try and keep up if they feel tired. We even remind our guy that if he needs a little more rest in a drill, just have a couple kids go ahead of him in line, they will think it's kind of him to do so. Help them advocate.

4. Use email templates to help educate coaches and parents before the season begins.

    5. Check in and watch your child, are they having fun? You will probably quickly be able to tell based on what you see, and how they speak about the experience. If they are having fun, relax and enjoy- so many of our initial fears were not his fears. Our son just loves to be out there and be a part of a team.

‍