Paige Figi, Mother of Charlotte, Patient Advocate | Dec 24, 2018
Something interesting has been very prevalent in my life for the last seven years. I have a daughter who has an untreatable medical condition. A very severe case with no treatment known to science. Of course you have to go through everything that's available in terms of treatment, but you reach a point where you have to look outside of the box.
In the very beginning when Charlotte was three months old, I waited with her in the ICU and the ER's, waiting to try her first treatment from three months to six months. At the time she was on nothing, and having these massive seizures. She has epilepsy- Dravet Syndrome. And in the emergency room, you can imagine these doctors thought I was nuts because I didn't have her on a daily treatment yet. She wasn't having as many seizures back then as she was when she was five years old, when was having hundreds and hundreds a week. But back then she'd have one or two a week, and they were hours long. They could be two hours long, land her in the hospital, the emergency room, or in the overnight sta...
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