Kyle has an untreatable, incurable (so far) neuromuscular disease called Spinal Muscular Atrophy, which means his body was weak at birth and will get weaker as months and years go on. His brain is strong and smart and clever, but his voluntary muscles are too weak for him to sit up, crawl, walk, or lay down on his stomach. He has driven himself in a power wheelchair since age two. He has endured surgeries for muscle contractures (joint muscles so tight that he can’t straighten his legs). His jaws are sometimes too fatigued to chew and he has weak swallow muscles, so he is nutritionally sustained by tube-feedings at night through a hole in his stomach. This kid is a warrior and has a lot to deal with on a daily basis, which is why we are so relieved that he has baseball in which to escape, lose himself in the game, in the competitiveness, the determination to get on base or for his team to win.
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Cassandra can be found on Twitter @aclevergirl. Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.
