There’s a wonderfully written story of a family’s life with spinal muscular atrophy (SMA) published this week in The Olympian newspaper from Olympia, Washington.  The article, written by Diane Huber, tells the story of the Lormers and their three year old daughter Kayleigh.  Kayleigh wasn’t expected to live past her second birthday, but this week she’s starting preschool.  Ms. Huber describes the little girl as a “fighter”.

She loves watching “Dora the Explorer,” coloring and reading books with her parents, Cindy and Dean Lormer. She has to be reminded to say please and thank you. Her favorite colors are purple, pink and red.

But she’s trapped in a body that’s dying.

Kayleigh has spinal muscular atrophy, a genetic disorder that attacks nerve cells in the spinal cord. The disease has made Kayleigh’s muscles so weak that she can’t crawl or walk or hold up her own head.

Yet she is a fighter.

Doctors predicted Kayleigh wouldn’t live past age 2, but on Oct. 29, she celebrated her third birthday. She got a new pink polka-dotted dress and a V-Smile, an educational video game console.

And this week, she’ll start preschool.

The Lormors want to provide their daughter with the best quality of life they can. She has taught them about life and how much they can bear.

“It changed everybody in the family. It made you really take a step back and appreciate what you have,” Cindy Lormor said.

They are all too aware that each day with their daughter is a miracle.

Visit the website for The Olympian to read the entire story online

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