Isabel’s Essay

Isabel’s essay for the NH Council for Youth with Chronic Disabilities

My brother, Gus

My brother Gus is such a happy little boy. He has a passion for music, and adores drumming. He is a genius when it comes to animals, and would rather watch a scientific documentary than a Disney show. He is radically different from other nine-year-olds, yet he still has absolutely no shortage of friends. Sometimes kids ask him why he can’t play tag with them, he replies simply, “My muscles are different than yours.”

Gus has Duchenne Muscular Dystrophy, or DMD. DMD is a disorder that blights one in 3500 boys born. These children suffer with rapidly worsening muscle weakness, and experience frequent muscle cramps. Many of them take a wide variety of drugs to slow the disease’s progress, but presently, there is no cure.

Since I was eight years old, when Gus, who is four years younger than I am, was diagnosed with DMD, it has been an enormous part of my life. Every time I do a school project on genetic disorders, I research DMD. Since 2011, my parents have run a foundation called Hope for Gus, searching for a cure for the disorder that has plagued my brother for years.

Gus got his first wheelchair a few weeks ago. It’s small and fitted to his body. Since then several friends have visited and they were so impressed that Gus could navigate a wheelchair that they had to try it for themselves. According to most doctors, a wheelchair will be a full-time reality by the time Gus is twelve. The same doctors predict Gus’s life span to be 25–30 years.

Everyone in my family knows how much Gus would like to be “normal,” though none of us have ever heard him voice that longing. That is the main reason why Gus is an inspiration. He goes through life happily, doesn’t pity himself, and though he is physically weak, he is one if the strongest people I’ve ever met. I am even sometimes fooled into thinking that Gus’s disorder affects his family more than it does him, but that’s definitely not true.

About a year-and-a-half ago, Gus was given a Wish by a foundation called High Hopes, a NH-based foundation that grants disabled children one wish. Gus’s wish was to go to Disney World. In April of 2013, my family and I boarded an early morning plane and set off for a seven-day trip to Orlando, Florida.

We stayed a resort called Give Kids the World, which is a resort designed especially for Wish Kids, meaning that everywhere we looked there were disabled children. One day, Gus and I were playing in the sand. He looked at all the kids in wheelchairs, kids who couldn’t speak, and kids with braces all over their bodies. Gazing up at me, he said, “Wow, Isabel. I am so lucky.”

Gus may see himself as lucky, especially compared to those other children. I definitely understand that, but I also think that really, I am the lucky one. Because I have Gus.