SMA Stories: Nella

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by Wendy Henderson |

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This very moving short film from S Group is about six-month-old Nella. Nella has type 1 spinal muscular atrophy (SMA), a rare and fatal genetic disorder.

Learn more about the faulty gene responsible for spinal muscular atrophy.

Her parents, Grace and Baron, talk about how devastated they were when Nella was diagnosed with SMA and how their lives have changed dramatically since then. Eager to enjoy the time they have with their daughter, the couple along with their two-year-old son have learned to treasure and savor the beauty in each moment.

Nella is now three years old and has a Facebook page dedicated to her journey. She just started on the recently FDA-approved drug Spinraza and her family are eagerly waiting to see how she responds to the treatment. We wish Nella and her family all the best.

Find out how nusinersen (Spinraza) works in treating SMA.

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