Hoover girl battles rare, fatal genetic disorder - WSFA.com Montgomery Alabama news.

Hoover girl battles rare, fatal genetic disorder

(Source: Bragg Family) (Source: Bragg Family)

A community is rallying around a little girl from Hoover who is battling a rare genetic disorder.

Clara Bragg is almost three years old and has GM1 Gangliosidosis.  It affects her brain and her life expectancy is only about 10 years old.

Clara was born on April 9, 2014 and hit all of her developmental milestones her first year. When she was about 14 months old, her parents noticed she wasn't walking. "We hadn't been concerned about it, but she started having some regression in terms of speech and we started becoming concerned and we started a journey to find out what was going on," said Jenny Bragg, Clara's mother.

Clara was officially diagnosed with GM1 in August 2016.  Unfortunately the outlook for Clara isn't bright. "She will slowly lose the ability to walk, to self feed.  Her breathing will become compromised and eventually she will probably not see the age of 10," said Jenny.

Sadly, GM1 affects 1 in 200,000 people and Clara is currently the only child in Alabama with it. Despite having this terminal illness, Clara's parents are hopeful for the future.

"Shortly after her diagnosis, we discovered that a researcher had actually cured animals with GM1, cured animals that have shown no signs of the disease and the only thing that was stopping them from actually having a human trial was funding," said Jenny.

That's when the Bragg's began their crusade "A Cure for Clara." Since Clara's diagnosis last August, they have raised nearly one million dollars. They need $400,000 more by July to start a human trial.

The human trial would be a joint effort between Auburn University, which has cured GM1 in cats, and the University of Massachusetts, which is researching GM1 in humans.

The potential cure for Clara is simple. Amazingly they can do that with a single IV transfusion.  It's about a 30 minute procedure once for life," said Ryan Bragg. That one-time, 30 minute procedure is all it would take to potentially save Clara's life and others.

The Braggs say this is the first time a fatal genetic disorder has been cured and the transfusion could potentially help patients with Tay Sachs disease.

To help reach their $400,000 goal by July, the Braggs are hosting "A Cure for Clara" fundraiser on April 8, one day before Clara's 3rd birthday. The fundraiser will be at 7 p.m. at the Redmont Hotel in Birmingham. There will be a silent auction, food, drinks and more.

Click here for tickets and more information,

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