Families Coping With Spinal Muscular Atrophy

In this video from Portland Press Herald shared in March 2015, we meet two families who have been touched by spinal muscular atrophy (SMA).

SMA families talk about their hopes for the future. Find out more.

Jason and Natalie Wylie from New Hampshire have two children, six-year-old Samantha and her baby sister Sophia. Sophia has been diagnosed with type 1 SMA, and the prognosis isn’t good–the family was told that she probably wouldn’t make it to her second birthday. But the family continues to hold out hope that the advances in medical science will make a difference for their daughter.

Emily and Ethan Bessey from Portland, Maine, went through the same experience with their son Ezra in 2012, but sadly Ezra died in 2013. To celebrate the life of their precious boy and to raise awareness of SMA, the couple founded the Hearts for Ezra Foundation, which hosts local events to raise money for the non-profit organization.

Find out about Cameron’s progress in a clinical trial for nusinersen. 

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