Living without Muscle Movement (Myotubular Myopathy)

Lucas lives with myotubular myopathy, a condition that leaves his muscles so weak that he can only move a few fingers. He desires connection with other kids, but struggles to create friendships because he cannot do many of the things other teenagers enjoy. Lucas wants others to know that if you want to be his friend just talk to him about his interests, like board games and music. Support SBSK at Check out Lucas’ blog at