Affected males with this progressive muscular disease become wheelchair bound before 13 years of age, are ventilator dependent in their late teens to early 20s due to respiratory failure, with death in their late 20s to 30s due to cardiac or pulmonary problems.

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"For people who were ventilator-dependent in many cases, the hospital staff have had to physically breathe for them using a bag, " Berggren said.

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In 1955, on my 17th birthday, I became totally and permanently paralyzed from my chin down, and entirely dependent on a ventilator to keep me alive.

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