Fundraiser turns light on little-known illness

Fundraiser turns light on little-known illness

The Sacramento Bee | August 11, 2011 | By Ben Schenkel

Getty Storm is wide-eyed, like most babies. But another unusual trait inspired her parents, Mark Storm and Kate Mathany, to nickname her “owl.”

“She has this depth and wisdom about her – like she was born an old soul,” Mathany said.

Getty shares more with an owl than her calmness and concentrated gaze. Sixteen months old and the namesake of the Getty Owl Foundation, Getty is limited to hooting and cooing. Beginning words like “mama” or “da-da” elude her – and she may never be able to talk.

Getty inherited spinal muscular atrophy (SMA), a genetic disorder that will eventually claim her vocal cords. Just as Getty defies SMA with her every chirp, so have her parents spoken up about the crippling condition.

In March, Storm and Mathany started a foundation to raise local awareness of SMA and support the larger efforts to cure or mitigate it.

Click HERE or on the image below to read more…

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