Bellevue girl keeps on smiling while battling disorder
Sandusky Register | June 7, 2011 | By Alissa Widman
Kylie Niedermier’s little brother loves to greet her with a kiss on the cheek.
Luke Niedermier, 2, gently approaches her chair, lingers for a few seconds, and then scurries away with a grin on his face.
“I don’t call him my little brother, I call him my ‘little bother,’” Kylie, 6, jokes. “He’s silly.”
She urgently calls for her mother, Heidi Niedermier, to wipe off his “slobber spot.” She can’t do it herself.
And if she wanted to, Kylie couldn’t chase after Luke to return the favor.
Kylie lives with Type I spinal muscular atrophy, a genetic disorder characterized by progressive loss of muscle control and weakness.
It’s left her almost completely paralyzed.
About one in 6,000 to 10,000 infants are born with the disorder each year, according to the SMA Foundation’s website.
The condition requires constant care.
Kylie is fed through a tube and is often hospitalized for respiratory treatments and intubation because of her weak lungs.
But if you ask Kylie, she’s just an ordinary girl, with a love of dress-up, puppies and especially the color purple. She can do a lot of things — read, sing with Luke, and identify any bird that flies by her window.
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