By: JACK M.
Her name is Charlotte Figi – Charlie to her friends – and for much of her little life she had suffered from a rare condition known as Dravet Syndrome, a form of epilepsy that gives rise to a constant ongoing series of seizures, accompanied by a long list of equally-serious associated disorders.
There is no known cure for Dravet Syndrome, and management is often only minimally successful. Charlotte began to show signs of the debilitating disease when she was just a few months old, and by the time she was five years old, she was largely confined to a wheelchair, could barely walk or talk, had gone numerous times into cardiac arrest and was having as many as 300 seizures a week, many of those being grand mal seizures.
Charlotte’s parents – Paige and Matt – had been on a merry-go-round of hospitals, doctors, specialists, and specially designed diets. She was taking a cocktail of drugs – some of which almost killed her – and there were even occasions where Charlotte was put on experimental medications. At best, all the treatments and drugs were of temporary, or no, help. The seizures kept returning, and they were getting worse. And Charlotte’s parents and doctors were out of ideas. There was even talk of putting her into an induced coma. Then, as a last resort, her mother began calling medical marijuana shops.
Paige Figi had heard of other parents whose children had similar symptoms to Charlotte’s, and who had incredible success with a strain of marijuana developed by a small pot-growing farm and dispensary in Colorado, owned and operated by Joel Stanley and his brothers. This particular strain of marijuana, which has a very low concentration of the psychoactive tetrahydrocannabinol (THC) but a high concentration of cannabidiol, has been named Charlotte’s Web, in honour of Charlotte Figi.
Before discovering the healing power of medical marijuana, Charlotte’s mother, Paige, had been on a merry-go-round of hospitals, doctors, specialists and specially designed diets – all to little or no avail.
Finding the Stanley Brothers was Paige Figi’s first step. She still had to abide by Colorado’s laws, which dictated that two physicians had to “sign off” on a permit to use medical marijuana. The vast majority of medical marijuana users are adults, so given Charlotte’s very young age her mother had found no one to come on board. But then she met Dr. Margaret Gedde and Dr. Alan Shackelford.
Both Gedde and Shackelford were reluctant at first, but after reviewing Charlotte’s case and treatment history, they both decided that the potential benefits far outweighed the risks. As Gedde herself said in an interview, “(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication. When you put the potential risks of the cannabis in context like that, it’s a very easy decision.” Shackelford added, “They had exhausted all of her treatment options. There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.” Charlotte’s parents immediately began administering the prescribed doses of the marijuana, in the form of oil.
Given the years that Paige and Matt had endured, the relief that Charlotte enjoyed was, for all intents and purposes, instant. For a short while, the seizures had stopped completely. That was three years ago, and today Charlotte is about as normal an eight-year-old as you’ll find. She still gets the very occasional seizure, but their frequency is a tiny fraction of what they used to be. She rides her bike, plays with her sister and brother, walks, laughs, eats, sleeps and gets into a little mischief every now and then. And her wheelchair is just collecting dust.
The story of Charlotte Figi has become part of the public debate, and public figures like CNN’s Sanjay Gupta have signed on to this debate. There has been a groundswell of support and enthusiasm for the strain known as Charlotte’s Web, and since Charlotte Figi’s success story, hundreds of parents have all but abandoned the mainline medical treatment for their children and adopted the medical marijuana approach, and with undeniable success. You can check out a partial list of those success stories here. And there are thousands more who are on a waiting list for treatment. Paige Figi has been instrumental in getting the word out about her daughter, and she has helped set up a non-profit, The Realm of Caring, to promote and disseminate information and news about Charlotte’s Web.
CNN’s medical correspondent, Sanjay Gupta, has signed onto the use of medical marijuana.
It’s still early, of course, and the conservative western health care system moves at the speed of molasses in cold weather. However, when the American Epilepsy Society issues the statement: “The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking,” it offers a guarded optimism for an idea whose time has probably come.
While evidence of marijuana’s efficacy is, as the AES suggests, “anecdotal”, it’s hard to argue with the number of people who seem to have benefitted from the use of medical cannabis. The long-term effects of the use of marijuana are still being debated in some circles, particularly with its use by young children, but unless and until governments everywhere at least unshackle us all from the outmoded regulations that hamper the use and research of marijuana for medical (and recreational) use, the Charlotte Figis of the world may go on suffering, and suffering needlessly.