Duchenne doesn’t define him.

Grant takes the stage at the CureDuchenne Luncheon. PHOTO COURTESY OF CUREDUCHENNE

You are an advocate for Duchenne, something you yourself have. How do you find your inspiration daily?

There are so many good people in the world who are working to cure Duchenne, like at CureDuchenne. Those not personally affected by my disease devote their careers to making life better for people like me. It is easy to find inspiration in that. I am also inspired by all the donors.

Recently, at the Austin Ladies Luncheon, you helped raise over $60,000 to help cure Duchenne. What is your next goal?

My next goal is to keep going to events and to continue to raise more and more money until this disease is cured. Unfortunately, it is going to take a lot more research to cure Duchenne, and research is expensive. I want to educate others that disability doesn’t mean impaired in life. You can still be happy. But, I still want a brighter future for me and the thousands like me.

What do you want to do with your life?

I want to have a family when I grow up. I want children and a nice wife. I’m worried that my disease will prevent me from having a family. The truth is that I may never be able to live on my own. I stay focused on my interests and what makes me happy. One of my favorite things to learn about is science. When I grow up, I want to work as a scientist. My body might have problems, but my brain is sharp.

What is your favorite thing to do?

My favorite thing to do is build with Lego. I also love to play video games and draw freehand. I also like Pokémon cards. I call my Pokémon card collection my college savings plan. If I keep it up, I might have enough to pay for some of my college. I also like going to CureDuchenne events and meeting up with my friends.

You’re an inspiration people can learn from. How do you stay so positive?

I find it easy to stay positive. I have a happy life. I wish I could run and not get so tired, and I wish that I did not have a disease. None of that prevents me from living a happy life. There are many people in the world in much worse situations than me. I feel lucky that I have a supportive family and friends who love me just the way that I am.