Whittier mom trying to find cure for daughter’s disease

Whittier Daily News | August 24, 2012 | By Sandra Molina

WHITTIER – Jaclyn Davis first heard the words, “spinal muscular atrophy” in July 2010.

Her daughter Isabella Joy, who prefers to be called Bell, was visiting a neurologist, when he told the young mom his diagnosis.

“The neurologist sent me to a geneticist to have yet more blood work done,” Davis said. “On August 29th of 2011, just two months before Bell’s second birthday, I received the devastating news that the blood work confirmed she was positive for SMA.”

Spinal muscular atrophy, the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

There are certain moments in people’s lives that carry great significance.

For Davis, 24, this was one of them.

“I remember their words telling me that most SMA children don’t live past two years of age,” she said. “I though to myself, `well, she’s almost two, and she seems so healthy.”‘

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