Brother of poet Mattie Stepanek. He was born with dysautonomic mitochondrial myopathy, as was Mattie and his other siblings. Rather than wait for him to get sick, the doctors put him on life support at birth, and for a long time that worked. Though he was tethered to oxygen, by the time he was 15 months old, he was actually singing the ABCs and counting his 123s. Mattie called him "Mamie". He lived like that for almost two years, and then went into cardiac arrest after being in septic shock and was in a persistent vegetative state until he died at almost four years old.
Brother of poet Mattie Stepanek. He was born with dysautonomic mitochondrial myopathy, as was Mattie and his other siblings. Rather than wait for him to get sick, the doctors put him on life support at birth, and for a long time that worked. Though he was tethered to oxygen, by the time he was 15 months old, he was actually singing the ABCs and counting his 123s. Mattie called him "Mamie". He lived like that for almost two years, and then went into cardiac arrest after being in septic shock and was in a persistent vegetative state until he died at almost four years old.
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