Ben and I have been married 12 years. We are native Memphians and raise our 3 children, Luke, Okley and Maggie in Memphis, Tennessee. Okley was diagnosed in 2017 with Fascioscapulohumerial Muscular Dystrophy, or FSHD.
Early-onset FSHD affects 1 in 200,000 people. It causes progressive muscle wasting, often first noticed in facial, shoulder, back and upper arm muscles. Okley’s first symptoms were leg pain and muscle wasting in his left calf. We first noticed more tripping and falling. After many doctor visits and a few misdiagnoses, our 5-year-old was diagnosed with muscular dystrophy.
As you can imagine, we had many questions once we had a diagnosis. What will happen? How do you pronounce that? What do we do? Shortly after his diagnosis, Ben and I decided we will never tell Okley, “You can’t do that.” As a twin, we knew we would treat both boys the same and give them the opportunities of a “typical” childhood.
Okley loves sports. Despite his doctor telling us Okley’s muscles must work four times harder than his peers, he wasn’t discouraged. He took a more “challenge accepted” approach.
He absolutely loves soccer. Last year he worked the hardest at every practice. He went to every skills clinic or soccer camp he could. At the end of the season he won Most Improved! Just ask him about his medal.
Basketball was a challenge. Okley was very frustrated that his arms were weaker. After countless Memphis Grizzlies basketball games, he saw Marc Gasol and Jaren Jackson Jr. out rebound everyone. Okley knew what he wanted to do. He said, “I might not make a lot of shots, but I’m tall and I will out rebound everyone!” … and he did. Sadly, they don’t keep stats in 1st grade basketball, but he was the best rebounder on the court. Ben calls him “a kind Dennis Rodman”. He is also the self-proclaimed champion of Marco Polo in the pool…
When we asked Okley what he wanted to tell everyone about FSHD he said, “I play harder and more aggressive on the playground because everyone else will always be able to play, but I don’t know when I can’t anymore.”
He wanted us to tell you that he can’t throw a ball “good” and he runs slower than his friends and that makes him sad. He notices changes to his body daily.
Okley lives his life at full speed. He plays with a reckless abandon, trying everything, because he knows that one day, he won’t be able to do it. He will jump out of his swing higher than anyone else, run full speed when others slow down, and try something scary when they waiver because he lives fearlessly due to the fear of one day losing the ability.
One of Okley’s frustrations with FSHD is interacting with his peers; he doesn’t shy from telling others of his muscular dystrophy. But as you can imagine, the other kids have trouble understanding how FSHD affects Okley.
“The very worst part is needing to take breaks walking at school because my whole class has to stop to wait. It makes me feel weak.”
As you can imagine, our family is affected by FSHD in many ways. We happily make sacrifices in our careers, finances, and everyday lives. We don’t know how fast his disease will progress, so we do our best to give him every opportunity to “do it all.” This disease taught us to live in the moment. Take the trip. Enjoy the adventure, both big and small.
There is no cure for FSHD, yet we stay hopeful. The Morgan Hoffman Foundation allows our family and families like ours to stay hopeful. We are beyond thankful for the important work the Morgan Hoffman Foundation does advocating for Muscular Dystrophy and continuing to search for a cure. After hearing our story, I hope you see how vital a cure is. By joining us and supporting the Morgan Hoffman Foundation, you play an integral part in achieving the dream of a cure. We are forever thankful for Morgan and Chelsea’s dedication towards bringing awareness to this fight and allowing us to join them.
Without support and a cure, Okley’s muscular dystrophy will continue to progress and make life more difficult. People say that muscular dystrophy is an incurable disease – in the words of Okley: “challenge accepted.”