Florida Mom Fights for Daughter's Rare Disease Treatment

In November 2025, Ceeariah Madden's world changed when her four-year-old daughter, Azylah, was diagnosed with CLN6 Batten disease, a fatal and incurable neurological disorder. The diagnosis came after months of tests, following Azylah appearing 'out of it' one morning and experiencing what her mother initially overlooked as subtle sleep 'jerks.'

Batten disease primarily affects the nervous system, leading to seizures, impaired movement, speech, and vision, with patients eventually losing all bodily functions. Azylah, given an eight to 12-year life expectancy, now suffers daily seizures and struggles with walking, a symptom of her progressive condition.

Madden is advocating for access to miglustat, a treatment in early clinical testing that may slow disease progression by inhibiting the accumulation of harmful fatty molecules. Despite its potential to offer more time with her daughter, Madden's insurance company denied coverage for the medication, which costs $8,690 for a 90-day supply without insurance. Madden hopes sharing their story will raise awareness for rare diseases and support other families facing similar struggles. She has turned to GoFundMe to fund the treatment, emphasizing that children with rare diseases deserve every possible chance to be seen and heard.