Meet Kara Fox, Dan Gaube and their son, Julian. He is a 6-year-old with a mega-watt smile bright enough to light up a city block. Julian is like most other children, with one major exception — he suffered severe brain damage at birth when he was deprived of oxygen for three full minutes. He has been diagnosed with cerebral palsy combined with a rare form of epilepsy called Lennox-Gastaut Syndrome.
Julian experienced his first seizure when he was 1 year of age; he then went three years before having another, leading his parents to believe it was a one-time event. Their hopes were dashed when the seizures reoccurred at age 4. Now his seizures happen on a daily basis, lasting anywhere from 10 seconds to five minutes. On his worst days, Julian can have up to 30 seizures.
Kara and her husband, Dan, tried everything imaginable to help their young son. In addition to Western medicine, they explored numerous alternative therapies. None worked, so in desperation, they resorted to one of the oldest healing therapies know to man — marijuana.
Friends told Kara and Dan about a father who used a Cannabidiol-rich strain of cannabis to control his child’s seizures. Cannabidiol (CBD) is a component found in marijuana that does not produce the psychoactive high associated with tetrahyrdocannabinol (THC). Still, Kara continued her research for 10 months before deciding to try marijuana after they received the blessings of Julian’s neurologist at the University of California, San Francisco.
Once the decision was made, they had to secure a medical recommendation for Julian and a caregiver card for Kara, which is easier said than done. Many doctors were reluctant to write a recommendation for a patient as young as Julian, but Dr. Stephen Bannister of Compassionate Health Options in Truckee determined that Julian was an excellent candidate for marijuana therapy.
The next hurdle was finding a source for this rare and valuable medicine. CBD is a relatively new phenomena that is not very plentiful. The plants are delicate and break apart easily without substantial support.
Further complicating the shortage, breeders have reduced CBD levels in marijuana for decades to raise the THC content, to the point where CBD has become practically extinct.
Providence intervened when a grower noticed an odd plant lurking amongst his crop. His first instinct was to pull it, but instead he had it tested and found it contained almost no THC but was loaded with CBD. Luckily, this grower was friends with Fred Gardener, founder and publisher of O’Shaughnessy’s, the medical marijuana researcher’s Bible.
Gardener and colleague Martin Lee started Project CBD to identify strains of marijuana high in cannabidol and to catalogue patients’ successes using it to treat their illnesses. Soon, patients were reporting that CBD helped control muscle spasms, which led to the discovery that it also stopped seizures.
Because these strains are considered rare, some unscrupulous profiteers are charging astronomical sums for CBD-rich marijuana. Patients have reported paying as much as $800 for an ounce of tincture, a diluted form of the pure oil extract. Project CBD came to the rescue by offering free mother plants to collectives that agree to supply the medicine to patients in their area at no cost.
I became aware of Julian through an article printed in Moonshine Ink about a fundraiser for his treatments. I contacted Kara to tell her about a local group of growers who were part of Project CBD that had a limited supply of high CBD-level medicine available at no cost to patients like Julian.
“I still can’t believe it,” said Fox. “It’s like a lifeline has been thrown to us just as we were about to go under.”
Kara and Dan noticed an improvement in Julian immediately after using the CBD-rich tincture. Within a week, his seizures became increasingly sporadic, and he went for days without experiencing any seizures at all. Now, on a bad day, Julian will have one or two seizures, but they are happening with less frequently.
Julian attends kindergarten where he has made great strides in his cognitive skills, balance and attention levels. His parents were jubilant when he recently uttered his first three-word sentence, “I am good.”
Kara Fox will be a guest on my radio show, “The Cannabis Crusades,” at noon today on KVMR radio (89.5 FM) to offer encouragement to parents of children with severe disabilities.
Visit m.caringbridge.org/visit/JulianGaube for updates on Julian.
Patricia Smith is chair for Americans for Safe Access - Nevada County.