Baby Ella – Battling SMA and Living the Life of a Princess
WNDU (NBC) | February 1, 2012 | By Maureen McFadden
Sugar and spice and everything nice, according to the nursery rhyme is what little girls are made of.
And the Hunt family of Osceola would agree. Their five month old daughter, Ella Lanay is an unbelievable joy, despite the fact that she was born was a fatal genetic illness called Spinal Muscular Atrophy. Ella’s mind is normal, but she can’t move.
Like many parents, they want their first daughter to experience the joys girls do growing up, but they have to do it in the time they have.
Ella may be one of the youngest girls with a Facebook page, but that’s where her mom Erica and dad, Dan and brothers Noah and Carter post their dream list for Ella.
Erica suspected something was wrong with Ella by the time she was about ten weeks old. She just wasn’t meeting the milestones parents are used to.
Doctors first suspected a muscle condition but a trip to Riley Children’s hospital on December 20th gave them a diagnosis.
Research is ongoing, but most children with SMA don’t live past two, according to Erica. “It is a fatal disease so it will take her life. We just don’t know when.”
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