Sitting cross-legged on the floor in her apartment outside of Houston, Faith's mother looks over at the toddler repeatedly as she talks. There are no physical indicators that signal the start of a seizure, but Faith's mother can tell one is on its way.
Everything about raising Faith involves watching and waiting, and today is no different.
Suddenly, Faith's mom jumps up, her words stalling mid-sentence, and makes her way to the mat where the chocolate-haired child is lying. She plops down next to her daughter, gives her moon face and chubby-cherub limbs a once-over, and places a hand across her tiny chest, feeling for any sign of what's to come.
It's an unnerving ritual, the watching and waiting, but Faith's mom can feel what is happening in her own bones. She knows that Faith is about to seize.
Slowly, the toddler's eyes begin to flicker. The gut-wrenching convulsions quickly follow, working their way up her tiny body, while the anxiety that has worn premature lines across her mom's forehead works its way into sheer terror.
Fear fills the room, and she yells out to no one in particular.
"It's a seizure," she says. "Faith is having a seizure."
Seizures are nothing new to the family -- they've been happening since Faith, now two, was about four months old -- but they are terrifying just the same. There is no respite from the epilepsy for the child, and modern mainstream medicine has no solutions for the young family.
Until recently, Faith's parents, who have asked that we not use any of their family's names, would call 911 and take her to the -emergency room, where doctors would give her antiseizure drugs. But the drugs didn't work -- they never worked -- yet the doctors would try anyway.
With the fear of what's to come -- Dravet Syndrome only worsens as children grow -- Faith's parents have decided to go an alternative route. They're ready to break the law for their daughter, and this means getting their hands on some cannabis oil.
Treating medical patients -- children or others -- with cannabis is illegal in Texas, and they could lose custody of their daughter for it, despite the clinical evidence of the drug's efficacy. But Faith could lose her life if they don't get a handle on these seizures.
And losing Faith is an unfathomable thought.
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