Don’t Call Them Unaffected: The Impact of Rare Disease on Siblings and How to Support Them

Blake Benton’s first memories of his brother Ryan Benton are of him starting to lose his ability to walk. “As I was learning to run, he was learning to use a wheelchair,” Blake Benton recalls.

Seven years older, Ryan Benton had Duchenne muscular dystrophy, and the disease had started to weaken his muscles by the time Blake Benton was a toddler. “It was natural for me to learn to be helpful, being cognizant of opening a door or getting something off the shelf,” Blake Benton said. “Those were the first duties, and then slowly more responsibilities piled on year after year, just out of need.”

For Blake Benton, becoming his brother’s primary caregiver came naturally. “It was a coin flip chance that I could have been the brother that was born with that disease, and when that really sunk in, it was just a no-brainer that I was going to do everything I could,” he said. Yet, the role took its toll and affected Blake Benton’s relationship with his brother and his own well-being.