Six-year-old Charlotte Figi, a picture of precious in her “Gatsby”-style bob and blue toenails, stands patiently as her mother reaches up her dress to change her out of her soiled Pull-Ups. – Charlotte never says a word. She hasn’t in the past hour, and won’t for at least another 30 minutes, when she finally whispers the name of a visitor who is about to leave.
In the Figi household, these are signs of progress: Charlotte saying something. Charlotte eating and drinking. Charlotte standing and walking.
Charlotte breathing.
About 18 months ago, in the winter of 2011, Paige and Matt Figi signed a “do not resuscitate” order telling medical personnel to forgo life-saving measures for their daughter and let fate take its course.
They’d done all they could to control the seemingly endless, violent seizures that hit Charlotte 20, 40, 60 times a day. They put her on an extreme diet. They tried at least a dozen medications, many with harmful side effects. Despite some promising starts, nothing worked. And the rescue medications they were giving her to stop the seizures in fact stopped her breathing. CPR brought her back to life more than once.
After years of watching a cruel, incurable genetic disorder called Dravet Syndome rob their daughter of her basic bodily functions and send her into convulsions that caused head injuries and broken teeth, they had reached the end.
“We really thought, this is a horrible existence; she’s not going to live much longer.” Paige says. “This is not a life for her. This is torture. She is suffering all day. I’m not OK with this. She wasn’t even human anymore. She’d lie in my arms drooling, seizing, screaming and crying.”
Then, in an act of desperation, or inspiration – or maybe both – Matt called Paige from overseas, where he was working, and suggested a radical approach to Charlotte’s treatment.
“We need to try cannabis for Charlotte,” he told Paige. “We live in a compassionate state.”
By Barb Cotter
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