Silas Hurd, 9, arises in the morning these days giddy with anticipation.
“Oh, he is excited, just really excited,” said his father, Forrest Hurd. “He asks over and over again, just to confirm that he is really going.”
This month, the reddish-haired boy from Nevada County went back to public school – nearly two years to the day after he suffered a seizure in a special education classroom, collapsing and gasping for breath as his mother rushed to his side and an ambulance raced him to an emergency room. The episode prompted his father to quit his job as a mental health program specialist to care for Silas at home.
At Silas’ new school, Ready Springs Elementary, he is receiving nursing supervision provided by the school district. The boy, whose cognitive abilities deteriorated from a rare form of childhood epilepsy called Lennox-Gastaut, is working on letter writing and recognition and his numbers – “just the basics,” his dad says – with abiding joy.
Silas being back in school, with half-day sessions and special instruction, is the outcome that his parents, Forrest and Nicole Hurd, both 37, had long hoped for.
Silas’ story, chronicled last spring in a Sacramento Bee series, The Silas Project, involved a controversial alternative medical experiment that began in mid-2014. Nevada County cannabis growers grew special strains for the child and crafted tinctures rich in a marijuana ingredient, CBD, or cannabidiol, a nonpsychoactive ingredient that, according to limited studies, may have medicinal benefits.
THE SILAS PROJECT
Silas’ rate of seizures, once 500 attacks a day including many incidents with multiple seizure types, began decreasing. Years after doctors told the family that Silas’ condition was life-threatening, the child’s speech and upbeat personality seemed to be rebounding. Ultimately, his attacks dropped 90 percent from past levels.
The Hurd family’s struggle and experimental medical quest played out against a backdrop of local antagonism over the marijuana culture in Nevada County, triggering protests over criminal marijuana grows, unwanted hordes of pot-harvesting “trim-migrants” and pot farms spewing contaminants into the environment.
Invoking his son’s plight, Forrest Hurd became the leading political voice against a ban on outdoor marijuana cultivation imposed by Nevada County supervisors last January. Arguing that the county’s effort to crack down on rogue cultivators also harmed reputable growers providing medicine for his son, Hurd helped defeat an anti-cultivation initiative, Measure W, in June.
Hurd now is protesting interim growing rules imposed after Measure W’s defeat. Hurd says several growers who used to raise plants for Silas’ medicine couldn’t meet strict acreage restrictions and property-setback requirements for outdoor gardens. He is expected to begin serving on a local committee in January that will look to draft a permanent ordinance.
“Everyone wants Forrest Hurd to be on there,” said Dan Miller, chairman of the Board of Supervisors.
In late spring, Silas went 47 days straight without a seizure, taking supervised doses of medicinal tinctures produced by Nevada County growers while continuing medical supervision with a UC San Francisco neurologist specializing in childhood epilepsy. He went nearly 18 months without the most devastating seizure type, grand mal attacks that would leave the child splayed on the ground, often vomiting and struggling to breathe.
But later in the summer, things turned for the worse. Silas was hospitalized for four days at UC San Francisco after his seizures picked up again and the grand mals returned. Forrest Hurd said Silas had an adverse reaction after being weaned off – and then being put back on – an anti-epilepsy drug, Depakote. Meanwhile, supplies of marijuana tinctures from a local medical marijuana collective, Grass Roots Solutions, dried up, leaving the family short of cannabis remedies, Hurd said.
The child’s condition recently improved again with a new batch of donated medicinal tinctures, produced from a special marijuana variety planted by other local growers inspired by reading Silas’ story of the child’s progress with a strain dubbed Medi-Haze B. Recently, he had six days without an attack, helping him rediscover his playful energy.
“Right now, he’s the same goofy kid playing ‘Star Wars’ in the living room, with light saber and all that,” Hurd said.
The father, meanwhile, has been inspired by connections he has forged with other parents of California children using marijuana remedies for severe conditions with doctors’ recommendations.
Hurd complains that California’s marijuana market – particularly after passage of the Proposition 64 recreational marijuana initiative – is overwhelmingly geared toward producing potent pot products for consumers, not sick children. So he is working to create a network to produce safe, non-psychoactive and low-potency remedies for kids under medical supervision.
Hurd is seeking nonprofit status for a California venture called the Caladrius Network, named for a snow-white bird in Roman mythology that was said to cure suffering by drawing illnesses from peoples’ bodies and unleashing the afflictions to be destroyed by the sun’s burning vapors.
He is hoping the program, for which he would serve as volunteer chairman, can secure a state marijuana manufacturing license in an appropriate county to produce tinctures, pain-relieving salves and other medications for children with cancer, intractable epilepsy and epidermolysis bullosa, a rare skin disease with intensely painful blisters and wounds.
He is presenting the plan at a January conference in Sacramento for a cannabis industry group, the California Growers Association, and hopes to lobby state officials for tax breaks for regulated marijuana farmers and manufacturers that donate product for the program.
“I had no ties to the cannabis industry before my son got sick. I felt I had to advocate because it was my kid’s life on the line,” Hurd said, before adding: “There’s no one out there producing the kinds of medicines all these kids need. It’s something I’m screaming from the rooftop.”