23/08/2026
❤️ "MIRACLES DO HAPPEN" ❤️
A Central Coast baby has become the first successful recipient of a trial medication for a rare genetic form of epilepsy.
Ten-month-old Bohdi Higginson was diagnosed with KCNT1-related catastrophic epilepsy, an often-fatal genetic disorder for which there was previously no known effective treatment.
Only 18 cases have ever been recorded in Australia.
His mother, Stephanie Higginson (pictured right), said his condition rapidly deteriorated, with 74 seizures recorded on his worst day.
But since April, Bohdi has been receiving an American clinical trial.
His mum says that although the smiling boy still has symptoms, the seizures have stopped, which is life-changing.
"It's a targeted therapy straight to the brain, and with this epilepsy, it's an overactive potassium channel, so this medication is stopping that overactivity from happening in the brain," she said.
"So, there is hope...and miracles do happen." 🌈