Charlotte Figi had her first seizure when she was three months old. It began after a warm bath, a common precursor to the first seizures in Dravet Syndrome. Within a couple of years, she was experiencing over 300 spontaneous grand mal seizures a week.
You may have heard of Charlotte’s story. She’s been featured on 60 Minutes, in a CNN documentary and is the namesake of a popular medicinal compound. The beginning of her story is common for children with Dravet Syndrome, a severe childhood disorder caused by a genetic mutation that impairs the brain’s neuronal “brake.”
Parents and doctors grasp for reprieve using FDA-approved medications, piling upwards of seven of them on young children with developing brains. They may find temporary relief, only for the seizures to return with a vengeance. The side effects are damaging, the severity of seizures frightening, the risk of death ever-present.
But Charlotte’s story deviated when her
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