Valley family battling rare genetic disease - WAFF-TV: News, Weather and Sports for Huntsville, AL

Valley family battling rare genetic disease

Updated:

By Josh Ault
WAFF 48 News Reporter

The number one genetic killer of children under two is called  Spinal Muscular Atrophy.  A young Huntsville girl is battling this rare disease.

The family hopes by sharing their story they can educate more people about SMA.  They hope more research can be done.  Right now, there is not cure for this fatal genetic disease.

Chloe Bush is considered a princess by all who know her.  Chloe's mom is proud of her special girl.

Jennifer Bush, Chloe's mom, said, "She loves to be read to, she love Elmo."

When Chloe was born, her parents knew something was not right.

Bush said, "She wasn't rolling over, she wasn't baring any weight in her legs."

It took six months before Chloe was diagnosed with SMA.  This genetic disease causes the nerves to the major muscles in the body to die.  Chloe can not move most of her body.  She can not even swallow on her own.  Chloe uses a ventilator to breath, and is fed through a feeding tube. 

"Its like if you wake up tomorrow paralyzed and couldn't do anything for yourself," said Bush.

Around 50 children are battling the disease in the state.  Right now, it is not mandatory for children to be test for SMA when they are born.  Her family wants to change that. 

Sandra Bush, Chloe's grandmother, said, "I want people to know, so we can impress our congressman to pass the SMA Acceleration Act."

"You can write our senators and our governors, tell them we want them on board," said Bush.

Chloe reached a milestone last week when she reached her second birthday.  A child with SMA only has 50% chance of making it to the age of 2.  The Bush Family hopes one day a cure will be found.

Chloe is one of only 2 children here in the Valley known to have SMA.  Aiden Bundy, an 19-month-old boy, from Russellville is also battling the disease.  To learn more about SMA go to www.fsma.org or http://www.caringbridge.org/visit/chloebush.

You can contact Josh at jault@waff.com

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