By Jordan Cantrell Smith, as told to Michele Jordan
We are a bustling family. My husband, Brandon, and I live with our children – my daughter Chloe is 14 and my son Ethan is 16. We have four dogs – cavaliers and a hound dog mix – and a cat to round things out. We love hanging out on the back porch, watching football and listening to good music with good friends and good food. If you drove by and saw our family, you wouldn’t know the mountains we’ve climbed.
Something Is Different
We knew something wasn’t right when we were at the park with a child younger than Ethan. We’d have to walk close behind Ethan and help him climb while other children his age had no trouble. We knew something was wrong. He would meet every milestone prior to then. But he never crawled and didn’t walk until he was 14 months old. If I knew then what I know now, the signs of Duchenne muscular dystrophy (DMD) would not have gone unnoticed.
Ethan was diagnosed two days before his second birthday. After several rounds of testing to figure out why he wasn’t gaining weight, doctors discovered elevated CK levels. Then, genetic testing soon confirmed Ethan had Duchenne muscular dystrophy.
My first thought was, “I have no clue what this is!” Then, I went home and researched and tossed all the sports stuff that was in his room and decorations as I tried to envision a different future for him.
I’m grateful for the Muscular Dystrophy Association for its support and for connecting us with specialists at a children’s center in Alabama. My family received information and support we didn’t even know existed. Its family support and resource center helped us navigate what to do next, connected us with care teams, and introduced us to other families who understood life with DMD.
A New World for Us
While we built a family of those living with DMD, we also had our own family. Friends and family were all sad for us but also didn’t know much about it. While it is genetic, there’s no family history, and so this was so new for all of us. We have a wonderful support system. They came together to start a fundraiser on behalf of Ethan as a way to do something. For several years, we had the Ethan LyBrand March that raised over $10,000 each year. This fundraiser brings together friends, family, and community members to a local park to all march for MDA research.
While we’ve been blessed to have so many resources, my strength comes from Ethan’s strength. He is simply the most amazing person I have ever met, and his impact on others is astounding. I also have the most supportive husband. Chloe is Ethan’s biggest cheerleader and always there to help him. When Ethan was selected as the Muscular Dystrophy Association National Ambassador in 2020, it gave our whole family a platform to advocate for others and share hope that research and community can bring. Ethan’s “Joke a Day for MDA” series was wonderful for Ethan and showed the support of the community. During the COVID-19 pandemic, Ethan used humor to encourage others and bring awareness to muscular dystrophy by sharing a joke each day. His videos went viral, and he was even named one of Newsweek’s “Heroes of the Pandemic” in 2020!
As the Sun Rises and Sets
For us, DMD has completely changed our lives. Anytime we think about doing anything, we consider if it is accessible and how it would work for Ethan. We’ve modified our sunken den, given Ethan our primary bedroom, and remodeled the primary bathroom and closet to have an accessible shower, toilet, and sink. Our doors all have ramps so that he can easily get into the house with his wheelchair. Finding people to help with Ethan isn’t easy, so these updates to our house help.
Currently, Ethan is not on any treatments, as most of them are not an option for him. He takes steroids that aim to slow the progression of his disease a bit. I wish I could say that we’ve been overwhelmed with hopeful moments, but that’s not always how this disease works. As patients get older, sometimes the hopeful moments can be few and far between. This is a horrible disease that can literally take away their ability to do anything. We are hopeful about the progress for other boys and families to benefit from more research and treatments.
Until then, I’ve learned to remain involved and connect with others. Things like the MDA summer camp have helped Ethan have a positive attitude about being in a wheelchair and feeling more independent. He has never complained about it!
I’m often asked my advice for other parents. I’d say get involved with organizations like the Muscular Dystrophy Association and make those connections so that you’re never alone. Surround yourself with people who lift you up. Find your “Ethan” – someone passionate about encouraging others and showing that kids with Duchenne can dream big, advocate fiercely, and live full, joyful lives.