Christine Flowers
The pandemic has turned our world upside down. We work from home. School is cancelled indefinitely. Weddings, graduations, baptisms and all of the other indicia of the normal trajectory of a human life are suspended. This is what it must like to be in Limbo, that now defunct Catholic state of existence without boundary, but also without God. The anxiety is real, palpable and weighs on all of us. On some, though, the weight is much heavier.
There is a little girl who should have had no weights on her young shoulders. She should, after so many years of sorrow and pain, been well and happy and enjoying the budding spring. She earned her hard-bought happiness, through a sacrifice that no one anticipated. But the coronavirus stole from her the life she should have had.
Charlotte Figi was a child when she started having terrible seizures. Nothing could stop them, and their violence and unpredictability caused her desperate parents to look everywhere for a cure, or at least some respite from the tremors and the terror. Her condition, called Dravet Syndrome, was a rare form of epilepsy that couldn’t be controlled by any known medication. She wasn’t expected to live past the age of 10.
But her parents heard of the beneficial effects of medical cannabis, and moved to Colorado, where the drug was legal, to see if it might be able to help their little girl. And it did. Her journey was documented in the film “Weed,” which showed the ways that the non psychotropic drug helped her. A special strain of it was created, and named in her honor, “Charlotte’s Web.” And she inspired thousands of other people, children with seizure disorders and the parents who loved them, providing hope that there might finally be a cure for this debilitating condition.
Tragically, Charlotte was unable to resist the devastating impact of COVID-19. While it was not conclusively established that she had died of the virus because initial tests came back negative, it is likely that she became infected in early March and by the time she was tested for the condition, it was too late. Because of the respiratory problems brought on by the virus, Charlotte began to have seizures again, one of which caused her to go into cardiac arrest. She passed away on Tuesday. She was 13.
Like Ryan White, the child who provided a face for the AIDS crisis a generation ago, Charlotte Figi humanized the struggle for those who sought solace in revolutionary and controversial treatments. Because of her willingness to go public with the illness, and because of her parents’ deep love, Charlotte was able to remove the stigma that had been unfairly placed on medical cannabis. People were finally able to see just how this treatment, in its many variations, could save lives.
I watched a segment on CNN where Sanjay Gupta spoke about Charlotte, and could barely keep his composure. The doctor had been a vocal and notable critic of the benefits of medical cannabis, doubting its efficacy (although rarely its safety.) However, after having spent significant time with Charlotte, and telling her story, he became convinced of the truly therapeutic impact CBD could have, particularly on children whose immune systems are much more delicate.
It is particularly cruel that Charlotte Figi could survive and become a success story at such a young age, and give very substantial hope to other children who suffered from seizure disorders, but then would succumb to the pandemic that is swirling around us. In words that approached poetry, Charlotte’s mother announced her death by writing “Charlotte is no longer suffering. She is seizure-free forever.”
While there is some comfort in the knowledge that this warrior child is finally at peace, the price that she had to pay is far too high. This virus has stolen far too much, far too many moments of joy, far too many lives, and even the unappreciated pleasures of normalcy.
That Charlotte Figi was among these losses triggers a sadness that transcends normal comprehension. But her legacy, as that of Ryan and Alex, lives on in the memory of those who themselves will live on, because of their journeys, and their courage.
Christine Flowers is an attorney and a columnist for the Delaware County Daily Times, and can be reached at cflowers1961@gmail.com.