Patricia Smith: Walk a mile in the Hurds’ shoes
March 24, 2016
Deborah Wilder, chair of the Nevada County Republican Party, made some "unfortunate" comments concerning Silas Hurd, an 8-year old Lake Wildwood child who suffers from a rare form of intractable epilepsy.
"Intractable" defines a condition that it is uncontrollable by traditional methods. Silas has been diagnosed with Lennox-Gastaut Syndrome – dubbed intractable childhood epilepsy — because most patients do not live to become adults.
Let that sink in. Most children do not live to become adults. After trying every drug Western medicine had to offer, special diets, and offered terrifying medical choices like dissecting whole lobes of the brain and year-long induced comas, what would you do to save the life of your child?
For Ms. Wilder to claim the Hurds are "using their unfortunate child as a publicity stunt," underlies her basic misconceptions about medical marijuana which, more than likely, are shared by many people who have not walked a mile in the Hurds' shoes.
We would all be better served by forming a Community Stakeholder’s committee to find a compromise between patients’ needs and homeowners’ rights.
Here are some facts to consider:
After the Hurds were told by Silas' doctors "to prepare for the worse," they turned to medical cannabis out of desperation, but with little hope it would work. Finding a pure source of medical-grade cannabis proved more difficult than expected even though they live in Nevada County, an area well known for plentiful cannabis cultivation. Having no idea where to look, who to ask, or even what they needed, they visited a dispensary that advertised "high CBD" tinctures.
The Hurds' hopes were dashed when they found that Silas did not respond to commercially prepared tinctures which are often produced from dubious sources. A support group of parents who have children with various forms of epilepsy urged them not to give up as some children responded to different ratios of CBD:THC. After much trial and error, they stumbled on a strain of cannabis called Medi-Haze that prevented Silas from having a seizure for more than four months.
If it seemed too good to be true, it was. Slowly Silas began having seizures again. The Hurds were advised to rotate different strains to keep Silas from developing a tolerance to the medicine. That method helped significantly, but it proved difficult to find a consistent supply of strains to keep him seizure free. A call went out to responsible organic cultivators to grow speciality strains for Silas.
The community responded in spades, donating raw material for his medicine (and they have been doing it quietly and anonymously for several years). It is insulting to insinuate that "growers" recently latched onto this family for their own agenda. Does this sound like illegal growers who are only interested in profits?
Measure W allows patients to grow 12 indoor plants under one 1,000wt light. Period. No legitimate patient can produce enough medicine under this scenario, but these limits were created without consulting doctors, cultivators or patients — in short, anyone with a passing knowledge of the subject. Would you ask a plumber to decide which medication you should use or how much?
One problem is that CBD-rich plants, which are so effective at controlling seizures, do not grow well under artificial light spectrums and typically only produce 3/4 of a pound outside – very small yields. There is no way to produce enough medicine under this scenario and it's just wrong to force cultivators to break the law in order to produce medicine for sick children (or adults).
After the fire storm that followed Ms. Wilder's comments, she said, "I think this child is suffering from a horrible disease and this community should do whatever we can to support his treatment and recovery" – then requested that the party's membership contact their supervisors to support Measure W that would prevent Silas from obtaining his medicine! It is impossible to "support his treatment" while supporting a ban that offers no viable options.
We would all be better served by forming a Community Stakeholder's committee to find a compromise between patients' needs and homeowners' rights. Perhaps Ms. Wilder and the Hurds could find a solution by working together.
In the meantime, I urge everyone who would like to learn more about this issue to attend a special event at 6 p.m. April 20 at the Foothills Event Center, 400 Idaho Maryland Road in Grass Valley. Forrest Hurd will discuss his family's journey to save their son and other speakers and entertainers are being added to the lineup. The event is free but donations will be accepted to offset expenses. For more information, please call 530-933-8009.
Patricia Smith is Nevada County chair for Americans for Safe Access.