Pubdate: Thu, 02 Jun 2016
Source: Sacramento Bee (CA)
Copyright: 2016 The Sacramento Bee
Author: Peter Hecht
Note: Chapter 3 of 3

The Silas Project


Nevada City - Silas Hurd's "golden ticket" was losing its luster.

The Medi-Haze B provided by Grass Roots Solutions, the Nevada County 
medical marijuana collective rallying to help the boy, wasn't having 
the same effect. His seizures returned in late 2015 following a 
four-month respite that had brought his parents so much hope.

But Nicole and Forrest Hurd still believed in the potential of CBD - 
a compound in marijuana that has shown medicinal promise in limited 
childhood epilepsy studies - to help their son.

Grass Roots Solutions crafted new CBD-rich tinctures from specially 
cultivated cannabis strains, and Forrest and Nicole wove them into 
Silas' therapy. His seizures continued but were less frequent, less violent.

Silas began to recognize when the seizures were coming on. He would 
seek out his parents, sometimes showing up at their bedside at 4 
a.m., to get help with an impending attack. He found ways to express 
his thoughts on what was happening.

"There's a spider on my brain," he told his mom.

He surprised his doctors at the UC San Francisco Pediatric Epilepsy 
Center by asking if they "could get the mouse" out of his head.

Dr. Joseph Sullivan, Silas' neurologist at UCSF, said the marijuana 
tinctures Silas was getting in Nevada County appeared promising "as 
an add-on treatment" to his ongoing care. He believed that the 
absence of the most violent seizures that once regularly shook Silas' 
frame were evidence that the tinctures were having "a significant impact."

"If I trust a family and they are reporting improvement, that's what 
I have to go on," Sullivan said. "It is already anxiety-provoking for 
them to feel they have to procure their children's medications" from 
marijuana growers.

In January, as the boy's attacks were resurging in intensity and 
number, the Silas project faced another challenge: a deepening clash 
over Nevada County's pot culture.

Sheriff Keith Royal had long been a leading skeptic of California's 
Compassionate Use Act, arguing that the state's medical marijuana 
setup served as a cover for pot growers wanting to make money and 
stoners wanting to get high.

In Nevada County, he said, an influx of rogue growers were flouting 
cultivation limits and trafficking pot on a black market for 
out-of-state consumers willing to pay top dollar for prime Northern 
California cannabis.

County supervisors also complained, saying they were getting an 
earful from constituents who felt the explosion in pot farming had 
become a dangerous intrusion on community life. In many ways, the 
sheriff served as a voice for that frustration, asserting the county 
was paying a steep price for having loosened its outdoor medical 
marijuana cultivation regulations in 2012.

On Jan. 12 this year, Royal called upon the Board of Supervisors to 
take dramatic action.

Just a few months before, Gov. Jerry Brown had signed the state's 
first-ever regulations to govern medical marijuana growers and other 
pot businesses, establishing rules that would allow them to earn 
legal profits. Come fall, California residents were expected to vote 
on a statewide initiative that would legalize marijuana for 
recreational use, but still allow counties to ban outdoor cultivation.

That January day, supervisors were considering an ordinance that 
would impose an outright ban on outdoor marijuana growing, prohibit 
any form of commercial growing and set restrictive plant and wattage 
limits for indoor grows. The aim was to drive big pot farms out of 
the county and kill the incentive for others to come.

Supervisor Ed Scofield, a Grass Valley native and former head of the 
Nevada County Fair, had supported the permissive cultivation rules in 
2012. Now, he regretted his vote. "I have so many constituents who 
have to deal with marijuana growers around them," he said. "It's 
gotten beyond control."

The prospects of an outdoor ban were especially worrisome to Forrest 
and Nicole Hurd. Grass Roots Solutions members said the restrictions 
would imperil their ability to produce tinctures for Silas, whose 
seizures once were so frequent and catastrophic that he largely lost 
his ability to speak. They believed the CBD-rich strains that were 
proving effective needed the full-spectrum light of outdoor gardens 
and couldn't flower indoors, particularly with the county's 
1,200-watt lighting cap.

The proposal raised other concerns for the family. The collective was 
providing Silas with cannabis low in THC, the potent compound that 
produces the high so many users want. If cultivators were limited to 
12 indoor plants in garages and greenhouses, would they have the 
space or incentive to grow cannabis low in THC?

What about cost? Grass Roots Solutions was providing Silas' special 
tinctures for free. Before they stepped up to help, the family was 
paying more than $300 for a 12-day supply from marijuana dispensaries 
outside the area.

Was it time to leave the county? Should Nicole quit a job she loved - 
one that provided the family's medical insurance - so they could 
search for solutions elsewhere?

Forrest decided to take a stand.

On the day of the vote, advocates, patients and growers crowded into 
the Board of Supervisors' chamber in Nevada City. They argued against 
the ban, imploring the sheriff to target crooked growers and 
traffickers, not those with legitimate medicinal gardens.

Forrest made his way to the microphone. He had fashioned a cardboard 
photo collage of Silas, who wasn't in attendance. "Behind me is this 
picture I thought I'd share of what a cannabis patient looks like, 
one that can't advocate for themself," Forrest said.

"I don't know how to explain to you the terror a parent goes 
through," he said. "We watched helplessly as the seizures washed away 
his cognitive ability, his ability to speak, his ability to move the 
way he had before."

Forrest recounted how conventional medications had failed and how his 
search for help had led him to "lawful citizens" growing marijuana in 
Nevada County.

"I wish we would separate the word 'medicine' out of this, because 
the problems we have are due to people who abuse the law," he told 
the supervisors. "That has nothing to do with medicine. This young 
man needs medicine, and I hope you take that into account."

A visual indictment

Even advocates for medical marijuana concede that Nevada County has a 
pot problem.

Royal has described the area as suffering from unchecked 
environmental destruction, water theft and crime. He reported more 
than 330 complaints in 2015 related to pot farms, pollution, odors or 
the homeless "trim-migrants" who stream in to harvest the buds. 
Officers issued more than 70 citations last year for farms exceeding 
cultivation limits.

At the Board of Supervisors meeting, the Sheriff's Department offered 
a visual indictment of the county's cannabis culture via a PowerPoint 
presentation. It included a Google Earth photo of the county's 
Greenhorn/Rollins Lake area. Digital thumbtacks on an aerial picture 
of the sensitive watershed marked well over 60 marijuana farms carved 
into the woods, near creeks, streams and family campgrounds.

Another photo showed a house engulfed in flames from a butane 
explosion caused by a cannabis honey oil lab. Others showed marijuana 
grow sites strewn with garbage and pesticide cans. A sheriff's 
supervisor ran through a list of news links about pot raids and criminal cases.

Among the people prosecuted in recent years was John Gross III, a 
resident of Rough and Ready, sentenced in 2014 on federal drug 
charges in connection with the seizure of 2,800 marijuana plants and 
another 100 pounds of pot destined for a Sacramento dispensary. 
Another 4,100 plants were seized in 2014 from properties tied to a 
Nevada City woman, Patricia Albright, 64, who pleaded guilty to 
illicit cultivation and illegally structuring banking deposits to 
avoid federal reporting rules.

Royal didn't see much difference between the big, profiteering 
marijuana producers and a collective of local cultivators working on 
the Silas project. In an interview, he characterized Grass Roots 
Solutions the same way he did most pot growers. "The association 
isn't about medicine," he said. "It's about money."

It was a forceful presentation. The supervisors voted 4-1 in favor of 
the sweeping new restrictions and a ban on all outdoor cultivation.

"My gosh, look at the pictures," said board chairman Dan Miller, 
referring to the Sheriff's Department PowerPoint. "The illegal 
herbicides and pesticides that are not supposed to be there. The 
trash. The human waste. The loss of wildlife. All of that is what 
we're faced with."

The vote left Forrest and Nicole reeling, wondering what to do next.

'I stand with Silas'

Not long after the hearing, Forrest received a call from Heather 
Burke, a Nevada County medical marijuana lawyer. Burke had seen a lot 
of advocates "get on their soap boxes," droning on in the abstract 
about pot's medicinal benefits and the rights of marijuana patients.

In Forrest, she saw something different, a sympathetic, articulate 
figure, completely on point about his son's needs. "He was so 
considerate and so compelling," Burke said.

Along with the ban on outdoor and commercial growing, the supervisors 
had voted to put an initiative on the June 7 ballot that would 
reinforce the new restrictions if passed by a majority of county 
voters. If a majority voted yes, the new ordinance could not be 
lifted without another vote of the people. If the majority voted no, 
the supervisors said, they would revisit their Jan. 12 ordinance.

Though language in Measure W was similar to the ordinance supervisors 
had passed, Burke saw the initiative as a far greater challenge.

"If this goes through and it withstands legal challenge, it's 
bulletproof," Burke said. "If we get a new Board of Supervisors, and 
they're all marijuana-friendly, they cannot do anything except take 
it to another (public) vote."

Forrest agreed to be the petitioner in a lawsuit that claimed Measure 
W was "untruthful, confusing, misleading and not impartial."

Nevada County Superior Court Judge Candace Heidleberger's March 7 
ruling left Measure W on the ballot. But she ordered the county to 
rewrite the ballot analysis, because it left an impression the 
initiative would "replace or repeal" the cultivation ban - even 
though the January ordinance would stand regardless of the vote.

The judge also said the analysis falsely promised that supervisors 
would draft more permissive rules if Measure W lost, while the 
initiative language required no such thing.

Forrest immersed himself in political activism in Silas' name. He 
printed purple-hued fliers - for the color of epilepsy - and passed 
them out at a March 8 Board of Supervisors meeting. The fliers 
included a photo of Silas, wires taped to his face and head, 
undergoing a procedure at UCSF to test for brain abnormalities. They 
provided a description of Lennox-Gastaut syndrome along with the 
headline: "Hope and Compassion: the fight for responsible lawmaking 
that protects all children with intractable epilepsy."

Supporters - many clad in purple - streamed into the board room. One 
man wore a purple Minnesota Vikings football jersey with "Silas" 
emblazoned on the back. Numerous speakers declared: "I stand with 
Silas." Song Kowbell, 58, delivered a tongue-lashing to supervisors 
"as a mother and a grandmother."

"I think you can take the compass of a society for how they treat 
their young and their old people," Kowbell said. "You wouldn't stand 
up for an 8-year-old boy. I would encourage you, if you have any 
conscience or compassion, to check your compass."

The purple procession irked some of the people supporting Measure W 
and the new marijuana restrictions. The Nevada County Republican 
Party responded with a mass email attacking "commercial growers" of 
marijuana for cynically exploiting an "unfortunate child."

County Republican chairwoman Deborah Wilder, a Grass Valley attorney 
who is also secretary of the state GOP, said she felt for Forrest 
because "if it was my son, I would be scouring the earth for whatever 
makes him healthy." But she said the father and child were being used 
- - and offered no apologies for the email.

"It's not like these growers are saying, 'We're just growing medicine 
for this young boy,' " Wilder said. "No, they're growing it and 
selling it all over the place. The overcultivation of marijuana in 
Grass Valley is a huge problem. ... I think they've been exploiting 
this young person for their own financial gain."

Patty Smith, president of Grass Roots Solutions, acknowledges some of 
its members earn a living selling marijuana to medical dispensaries 
outside the county. But she takes strong exception to being lumped 
with criminals and profiteers, saying her organization is a 
law-abiding collective of community-minded, environmentally conscious 
farmers growing their marijuana in small-scale outdoor gardens.

The number of plants needed for the Silas project has also become a 
point of contention. Smith and others in the collective contend it 
takes dozens of outdoor plants to produce enough leaves and buds to 
create Silas' special tinctures.

Sheriff Royal said he's certain the child's needs could be met with 
small indoor gardens and medical marijuana sources outside the 
county. In any case, he said, there was no way Nevada County, of all 
places, was going to run out of pot.

"I truly believe this family will get their marijuana," Royal said.

Forrest has continued to press his case, saying the sheriff has no 
understanding of his family's excruciating quest for a cure, and how 
many cannabis strains have failed to stop Silas' attacks. "Adults, 
grown adults, think weed is weed," he said.

In late February, Burke sent a letter to the Board of Supervisors, 
asking them to carve out an exemption to Measure W "to allow 
non-commercial outdoor cultivation of medicinal cannabis for children 
diagnosed with intractable epilepsy."

The supervisors refused. Chairman Miller said they had been taken 
advantage of before by growers who claimed to need more cultivation 
space for a vast array of illnesses. There would be no exception for Silas.

Medicine of last resort

Nicole said she is "incredibly proud" of her husband "for standing up 
for Silas."

But she has found the recent spotlight searing and painful. She takes 
offense at the local letters to the editor and online comments that 
portray her and Forrest as potheads or "hippies," when they are 
neither - "just regular people trying to help our kid."

Even friends she has known for years have asked "the silliest of 
questions," Nicole said. No, Silas isn't smoking marijuana. No, the 
tinctures aren't the same as honey oil, the liquid hash whose 
chemical processing has made houses explode.

Other exchanges have been more antagonistic. Nicole recently walked 
into the clubhouse at the Lake of the Pines Association, where she 
works as recreation coordinator. She froze. Sheriff Royal was giving 
his PowerPoint presentation in support of Measure W and the cultivation ban.

She watched as he delivered his signature line: "This isn't about 
medicine - it's about money."

"Not for us," she said aloud, shaking, then wheeled around and walked out.

Nicole didn't introduce herself to the sheriff. Royal said he never 
knew she was there.

Silas' parents have found some relief in knowing their child has been 
happily oblivious to the political dimensions his medicinal 
treatments have taken on. He continues to look forward to the two 
days a week he spends at Ridgeline Pediatric Day Health Center, a 
Grass Valley facility that provides day care and skilled nursing for 
children with developmental challenges.

Activities director Shawnna Frazer has come to know Silas as a child 
full of "happy energy." The staff is working with him to develop 
skills to help him cope when he becomes overwhelmed by stimuli. 
Sometimes, they just marvel at his playful spirit.

"I'm going to eat you for a snack!" Silas exclaimed as he played on a 
patio in early spring.

"What movie is that from?" asked center director Michael Lyman.

" 'Angry Birds,' " Silas answered.

The staff also has witnessed Silas' seizures returning in clusters. 
Lyman said they keep watch for "his twitches and head jerks and body 
jerks" and log his episodes. The more forceful attacks end in his 
retreat to a back room "where he'll lay down, zonked out for an hour or two."

Still, 15 months have passed since Silas has experienced the most 
severe forms of seizure  the devastating grand mals, atonic seizures 
and tonic events - a time period that roughly coincides with his use 
of Medi-Haze B.

Years ago, Forrest said, doctors told him Silas might not make it to 
age 10. Now, Dr. Sullivan says he faces a minimal risk of sudden 
epilepsy death.

"I think we can expect him to live a long life," Sullivan said. "But 
given his intellectual abilities and ongoing seizures, it's hard to 
think he will ever live independently."

With the Measure W vote coming up - and the outdoor grow ban already 
in place - the family's collaboration with Grass Roots Solutions 
faces an uncertain future. Smith said some growers may be scared off 
if the restrictions remain intact. But others plan to defy the ban. 
And the group is still hoping for a political compromise that would 
protect small medicinal growers.

On April 20, a purple-clad crowd of marijuana advocates gathered at a 
Grass Valley theater for an anti-Measure W rally and an update on 
Silas. It was a sobering session. Forrest played a video on Silas' 
life that included images of a sparkling-eyed 3 1/2 -year-old, a 
sequence of him overtaken by seizures and a photo of him as an older 
child, lying dazed on the carpet.

The crowd broke into applause when he said Silas went seizure-free 
for four months while taking Medi-Haze B. It fell silent when he said 
the seizures had resumed.

"Nobody knows when they're going to be the family whose last resort 
is cannabis medicine," Forrest said. "We're watching him slip again. 
It's more intense every day. We're up against the clock."

Following the January ban, Forrest and Nicole started to run low on 
locally produced tinctures. At the end of April, the family got a new 
Medi-Haze delivery from Grass Roots Solutions as well as a second 
tincture, a blend of three cannabis varieties, from a separate Nevada 
County grower.

Silas went on a new seizure-free streak. On May 20, his ninth 
birthday, he reached 28 days without an attack. Forrest and Nicole 
are hopeful, but they know the formulas could fail again, that their 
child's suffering could once more intensify. So, amid volatile 
politics and sustained uncertainty, the Silas project goes on.
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MAP posted-by: Jay Bergstrom