Ella’s Story: ‘I’m Not Here to Save Her. I’m Here to Take Care of Her’
ElmhurstPatch | February 2, 2012 | By Karen Chadra
Ella Casten is a smart, inquisitive little girl with a smile that will melt your heart.
In most ways, she is a typical 1 1/2-year-old. She loves her dog, her toys, and her brother and sister, Henry and Ava. She speaks in cute toddler language and wants to do things all by herself.
But she can’t. Her muscles won’t let her. Ella has a rare, genetic neuromuscular disease called spinal muscular atrophy, for which there is no treatment or cure. Her motor neurons are dying, causing her to lose muscle function. She first lost the use of her legs, and now she has trouble reaching and lifting even small toys.
Ella was born on June 10, 2010. She started out seemingly healthy, hitting all the normal developmental milestones in her first year. She began to stand and take a few steps.
Just five months ago, all that changed.
Her parents, Lincoln Elementary School teacher Michael Casten, and Lindsay Casten, a former Lincoln teacher, began to try to unravel the mystery with the help of pediatricians and therapies. An Internet search revealed what they had hoped was not the answer.
“I’ll never forget that night,” Lindsay said. “I Googled hypotonia (poor muscle tone) and hand tremors and one of the things that came up was SMA. Of all the possibilities we had been told, we didn’t want it to be that.”
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