Thursday, November 01, 2012

A Mother's Love

This cough-assist machine removes
secretions from Greer's lungs
(since she can't cough on her own),
and lowers the chances she'll develop
 a life-threatening respiratory infection.

There are moments in life when you meet someone who brings you to tears because of the beauty they offer to the world when the world has shown them such extraordinary hardship.  That's how I feel after meeting 4-year-old Greer and her mother, Kate.  

"It's not a sad life, but it will be a sad ending if a cure isn't found," says Kate.  She looks over her shoulder while she's talking to me.  Unable to stand on her own, Greer is strapped into a medieval-looking machine that keeps her upright.  

"I. Am. A. Ro. Bot." Greer repeated with a wide grin as her mom pulled the straps around her legs and waist.  Now, she's coloring on the tray in front of her and quietly chatting to herself - just like any other 4-year-old girl.

After a series of frustrating, inconclusive tests when Greer was two-years-old (and was still unable to lift her head off the ground), the diagnosis was finally made: spinal muscular atrophy (SMA).  SMA is a terminal and aggressive disease that affects young children.  It's the number one genetic killer of children under the age of two.  

No one - not her doctors, not her family -  expected Greer to survive long enough to celebrate her fourth birthday.  But celebrate it, she did.   Zooming around Hull's Paragon Carousel in her electric wheelchair ("She parallel parks better than her grandmother!" Kate jokes), Greer was the life of the party.  

Said the Pulitzer Prize journalist William Tammeus, "You don't really understand human nature unless you know why a child on a merry-go-round will wave at his parents every time around--and why his parents will always wave back."

Today, researchers at the Novartis Institute for Biomedical Research are working hard to find a cure.  In the meantime, Kate finds hope in the scientists' efforts, and is using her voice to inspire them to work harder, faster.  

"Most mothers tell their children about the world.  I'm telling the world about my child."  

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