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All posts tagged with : spinal muscular atrophy

Filed under: General

Bigger Than Me

Posted March 2, 2009 at 10:26 pm by Maureen

While I usually exploit my dunce-y motherhood moments in public blog posts, today I’m going to talk about something that’s bigger than me. Something a lot more worthy of attention than mishaps at Chuck E Cheese.

It’s easy for writers to remain in their own little cocoons, forgetting that there’s other people out there, forgetting that our words do reach people, forgetting that we have a public platform, albeit somewhat small.

Earlier this month, I received an email from a reader, Victoria, asking for my help. She has a sixteen-month-old daughter, Gwendolyn, who has been diagnosed with Spinal Muscular Atrophy (SMA). SMA is the #1 genetic killer of infants, and 1 in 40 people unknowingly carry the gene. The life expectancy is two years old.

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