Mother’s fight for daughter’s rare genetic disorder treatment gains support

ROCKFORD, Ill. (WTVO) — A local mother is fighting to secure access to a potentially life-changing treatment for her daughter, who suffers from a rare genetic disorder.

Scarlett Brooks, 10, has lived with GABRA-1 disorder for most of her life, a condition that affects communication between brain cells, leading to visual and cognitive delays.

“Being like a rare parent, it can be very isolating and you feel kind of alone through a lot of things,” said Miranda Cox, Scarlett’s mother.

From the age of one, Cox noticed differences in Scarlett’s motor skills, such as her inability to sit up or crawl on her own.

Scarlett was diagnosed with GABRA-1 disorder at age two, a condition linked to epilepsy, autism, and other neurodevelopmental disorders.

Cox has been advocating for a drug called Ravicti, which could benefit Scarlett despite being used off-label.

The cost of Ravicti could reach as high as $800,000, prompting the community to raise funds through efforts like a GoFundMe and a school coin drive.

“They did a coin drive, almost $3,000. We have such a supportive community,” Cox said, expressing gratitude for the local support.

Cox continues to advocate for her daughter, hoping insurance will cover the drug after clinical trials.

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