Forrest Hurd was watching his son Silas get sicker — and felt powerless to help.
It was 2012 when Silas, then 4 years old, began having seizures. In 2014, he was diagnosed with Lennox-Gastaut syndrome, a rare and severe form of epilepsy; there is currently no cure for the condition, which is known for being resistant to many anti-seizure medications.
By January 2015, Silas was having around 200 seizures a month, and the Hurd family — which includes mom Nicole and now 10-year-old Abbigail — was struggling to not only understand Silas’ condition, but to pay for his care.
Hurd could see the seizures taking a physical and mental toll on Silas; the boy was drained of energy and was losing cognitive skills, including the ability to speak in full sentences.
“I really felt like we were on this death row sentence at times,” said Hurd. “We’ve got this sentence, there’s nothing we can do, we just have to watch it happen.”
In March, the Hurds, who live in Penn Valley, began treating now 8-year-old Silas with a processed form of medicinal marijuana high in cannabidiol, or CBD, the non-psychoactive, therapeutic compound in cannabis. The first day Silas was given a couple of drops of the medicinal oil was the child’s first seizure-free day in more than three years, Hurd said.
That day turned into four seizure-free months. Treating Silas’ LGS with that particular strain of medical marijuana has stopped nine of the 10 seizure types Silas suffers from, Hurd said.
Suddenly, the family’s “death row sentence” no longer seemed inevitable.
“It just felt like we were granted this reprieve,” Hurd said.
But with Nevada County’s recent attempts to regulate medical marijuana, it’s as if the warden’s come calling again, he said. On Jan. 12, the county’s board of supervisors voted 4-1 to implement an emergency ordinance prohibiting outdoor marijuana grows and limiting indoor grows to 12 plants.
In June, county voters will decide whether to uphold the ban or to discard it, sending the board of supervisors back to the drawing board to come up with a revised ordinance.
While the issue plays out at the county level, Hurd fears the ordinance will make it impossible for him to get Silas the medical marijuana that’s been so successful in controlling the child’s seizures.
In the weeks since the blanket ordinance was imposed, Hurd has been advocating for the board to grant an exemption allowing outdoor grows to produce medicinal marijuana for patients with rare, intractable epilepsies — a group that would include Silas, and, by Hurd’s account, a handful of other families in the county who have children suffering from similar medical conditions.
“We are intelligent enough to have an in-depth, intellectual conversation that meets the needs of [the supervisors’] constituents while at the same time not neglecting a population of our community who is the most at risk,” Hurd said.
For Hurd, the timing of the county ordinance has been particularly frustrating. After obtaining a legal prescription and consulting with Silas’ doctors at the University of California, San Francisco, it still took Hurd several years of searching to pinpoint a type of marijuana that had any effect on Silas’ seizures.
Part of the reason the search has been so difficult, Hurd said, is because research on the benefits of using marijuana to treat epilepsy is still developing.
According to the Epilepsy Foundation, a national nonprofit dedicated to helping prevent, control and cure epilepsy, there is significant anecdotal evidence and a smattering of clinical studies that suggest cannabidiol can help treat epilepsy. But scientifically controlled studies haven’t yet proven that cannabis is an effective treatment for epilepsy — and further research on the topic has been complicated by federal restrictions that classify marijuana as a Schedule 1 drug, labeling it as having little or no medical value.
Hurd estimates the family tried about 10 different types of high-CBD medical marijuana strains, but none produced any lasting effects.
“I thought, our kid’s not going to be one of the lucky ones,” Hurd said.
But then he was pointed toward Grassroots Solutions, a marijuana collective in Grass Valley, which suggested Silas try a strain of marijuana known as Medi Haze that had been successful for another local family’s epileptic child. The collective began growing the strain specifically to produce medicine for Silas, at no cost to the Hurd family.
There are two common misconceptions about the county ban’s effect on kids like Silas, Hurd said. One is that obtaining medical cannabis for Silas is as simple as visiting an out-of-county dispensary. That would require finding one that either already grows the particular strain Silas is using, or would be willing to start, Hurd said. It would likely also require the family to come up with the money to obtain the medicine; Hurd said a 12-milliliter bottle of the oil, which lasts Silas about a week, can cost as much as $300.
A second misconception is that a small indoor grow would be an adequate way to treat Silas’ condition, Hurd said. Twelve plants isn’t enough to produce what Silas regularly needs — and even if it was, the amount of time and money it takes to develop and maintain an indoor grow — and have the yield processed into an oil — would have insurmountable obstacles for a parent caring for a sick child around the clock, Hurd said.
Over the past several weeks, Hurd has been attending board of supervisors meetings, as well as emailing and calling members of the board and county Sheriff Keith Royal in an effort to get them to understand the consequences the county ban is having on families like his.
His goal isn’t to add another voice to the debate over whether the ban is right or wrong, but to speak for “the most critical cases,” like Silas, who depend on medical marijuana but now have no way to legally obtain it.
“I’m saying, if that’s what we want to try to do as a society, let’s do it responsibly without seriously unintended consequences,” Hurd said.
So far, supervisors Dan Miller and Ed Scofield have responded to Hurd’s request to meet.
Scofield confirmed the board of supervisors can revisit the ordinance to add an exemption before it is submitted for the June ballot. But while Scofield said he has “no question” that medical marijuana is of value to Silas, he also said he sees no incentive for the board to revisit the ordinance before June.
“It’s a very small number that, to me, has a very legitimate reason for medicinal use, being overshadowed by commercialism, for-profit, who-cares-about-rules type of thing,” Scofield said.
But Silas can’t wait until June to see if voters repeal the ban, Hurd said. Without the ability to obtain the cannabis strain that’s been helping — and to search for other strains of medical marijuana that will make his treatment more effective — it’s not a matter of if Silas will regress, but how quickly it will happen.
Hurd is hoping if more people know about children like Silas, more will be inspired to back his request for an exemption to the ordinance; he’s been documenting Silas’ story at facebook.com/hopeforsilas.
“I don’t know anybody who would look at these children and say, you know what, they’re just a sacrifice we’re willing to make,” Hurd said.
To contact Staff Writer Emily Lavin, email firstname.lastname@example.org or call 530-477-4230.
“I don’t know anybody who would look at these children and say, you know what, they’re just a sacrifice we’re willing to make.”Forrest Hurd