We were in Florida for a few days last week taking part in a research study for Duchenne Muscular Dystrophy. The study part of the visit took several hours on a single day, but we intentionally planned an extra day in order to do something FUN! This photo was taken at Legoland.
Due to their Duchenne diagnosis, there are certain things asked of Samuel and Josiah that are not typically required of other boys at seven and almost nine years old: wearing night-time AFOs (ankle-foot orthoses aka night splints); 3x/week physical therapy sessions; purposefully avoiding stairs or too much physical activity; daily supplements and medications; regular blood draws and urine samples to check Vitamin D, calcium, and glucose levels among other things; participation in the above mentioned MRI study or a sleep quality intervention study or another study where they collect blood and urine samples to build a biomarker database to further Duchenne research.
Thankfully, they usually take much of this in stride. This is what they know. It’s all part of their day-to-day experience.
But Josiah and Samuel ARE just seven and almost nine years old and they are so much more than their Duchenne diagnosis. These little boys are clever, funny, talented, and handsome. They love Minecraft and animals and Legos. They look forward to outings at the zoo and time to play games on their iPads. They love pizza, ham and mustard sandwiches, and ice cream. They won’t admit it if you ask them, but they are each other’s best friends.
In that picture up above there’s not a worry in the world weighing them down. Duchenne doesn’t exist in that moment. They are two little boys riding the Beetle Bounce. The opportunity to put THAT look on THOSE faces? I’ll take it every time.
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