Eugene weekly., January 14, 2016, Page 12, Image 12

Jacques says it was this awakening to the way his talents
as a grower could help people that’s set him on the healing
path. “It’s a damn real thing,” he says of this newfound sense
of purpose. “I’m finally to the point where I feel like I’m
doing something that makes a difference in people’s lives.”
Certainly Amy Young would agree. Along with her
husband and four children, Young moved to Oregon from
their home outside Montgomery, Alabama, this past August
just to get her daughter Leni closer to Jacques, who she
calls a “legend” among medical marijuana patients. Leni,
now 4, was born with only a portion of her frontal lobe
intact, the result, Young says, of a huge stroke in utero.
“By her one-month checkup, it was very clear to us that
something was different,” Young says. “She couldn’t calm
down, she would cry and she had a hard time nursing.”
At just 34 days old, Leni underwent a cranial ultrasound
at a hospital in Birmingham, during which her condition
was discovered. At that point, Young and her husband were
told it was only a matter of time.
“You cannot have that much brain damage and not
have seizures,” she explains. “At that point, she’s got a
neurologist, a cardiologist, a speech and occupational
therapist, because we know there’s stuff coming down the
road.”
Medically and developmentally, Young says Leni
continued to progress “almost like a normal child” until the
seven-month mark, at which point the difficulties started.
“Within a few days, we were in-patient at Children’s
Hospital,” she says of visiting the University of Alabama
facilities. “She couldn’t stop seizing.” Leni was given what
Young says were “almost adult doses” of anti-epileptic
meds. Young and her husband were told to call palliative
care, who suggested the couple consider withholding
nutrition.
“They told us she was dying,” Young says. “They didn’t
think she’d make it to Christmas, and it was August.”
The Youngs decided to take Leni home instead of placing
her in hospice, because “anything that they could do, we
could do,” Young says. “We went home to snuggle her and
love her and follow her lead, whatever it would be.” Family
flew in from around the country to say their goodbyes.
And then, Young says, “Leni surprised us.” The anti-
epileptic drugs seemed to slow down her seizures, though
the infant was still having between five and 20 tonic-
clonic (or gran mal) seizures a day, while suffering a
series of myoclonic or smaller seizures in-between as well
as “absents,” which Young describes as “like a skip in a
record player.”
SHOULD THE MEDICAL CANNABIS PROGRAM GO AWAY ,
JACQUES NOTES, HIS CAPACITY TO WORK WITH KIDS
LIKE LENI WOULD BE ABOLISHED, REDUCING HIM TO
A SELLER WHO CANNOT MAKE A RECOMMENDATION ON
PHOTO BY TRASK BEDORTHA
TREATMENT FOR FEAR OF LEGAL REPERCUSSIONS.
ADAM JACQUES
12
January 14, 2016 • eugeneweekly.com
Despite surviving, Leni now seemed locked into an
almost vegetative state. “She had stopped moving at all,”
Young says. “She had stopped making any vocal noises
either. We had to gauge her mood by her breathing. That
went on for a good six months. She would be still and
didn’t make a noise. That was scary.”
As happens, Young and her husband began
communicating with other parents of special needs kids,
seeking alternative options for care. They began hearing
about epileptic children being treated with cannabis oil,
and came across the much-publicized story of “Charlotte’s
Web,” the high-CBD cannabis extract named after Charlotte
Figi, a 9-year-old with Dravet syndrome whose seizures
were reduced with the medicine. The Youngs joined a
group of parents in lobbying the Alabama Legislature to
pass Carly’s Law, which in March of 2014 legalized the
medical use of “marijuana-derived oil” in Alabama.
Despite the fact that a neurologist recommended Leni as
a subject for an early study of pharmaceutical cannabis in
Alabama, the child was excluded from the study because,
Young says, “she was not taking enough pharmaceuticals”
— not in dosage, she clarifies, but in sheer count. The
Youngs were up against the wall again; due to the severity
of Leni’s condition, they were nervous about waiting for
the FDA and DEA to sign off on the new law.
Alabama being, well, Alabama, and not among the most
progressive states in the Union, especially when it comes to
marijuana prohibitions, the Youngs realized they couldn’t
risk going underground to get Leni treated. “So we made
the decision that we have to move,” she says. “We gotta
go somewhere where we can get this stuff, was our first
thought. OK, where do we go? Who has been doing this
the longest?”
They began shopping around states with medical
cannabis programs, looking hard at Colorado Springs,
where a large community of special-needs parents has
sprung up thanks to that state’s early passage of medical
cannabis legislation. Then Young’s husband, Wayne,
landed a job in Portland, and the family decided to move to
nearby Newberg. They arrived this past June.
“At this point,” Young says, “I contact a couple friends
that I trust who are part of the movement. And everybody
came back with the same name. He’s like a legend,”
she adds, speaking of Jacques. A mutual friend hooked
Young up with Adam Jacques’ wife, Deborah, who runs
the Oregon Microgrowers Guild, the couple’s medical
cannabis dispensary in west Eugene. Young told Deborah
about Leni. “Deborah and I started talking online,” she
says, “and that was all she wrote.”
Simply leaving Alabama seemed to have a beneficial
effect on Leni’s condition; there was a 20-percent decrease
in seizures, which Young says might have something to
do with differences in barometric pressure. The family
was careful in moving forward, making sure Leni and the
Jacques got comfortable with each other before starting her
on doses of cannabis oil. “We also wanted them to get to
know her,” she says, “so that they would have a better idea
of what they were dealing with.”
In August, they started Leni on a mix of cannabis oils
that contained high counts of CBD as well as THC-A,
a nonactive form of THC that doesn't get you high.
According to Young, they began with “an incredibly small
dose that both Adam and we thought would do nothing,
and within the first hour it was very clear that she could
focus on things further away. The whole thing happening
instantly is not crap. It’s real.”
Before the end of the first week of treatment, Leni was
watching Disney’s Frozen and singing along, Young says,
“whereas before she couldn’t focus on the movie.” She
began holding her head up. She started using her hands.
“We bought toys this Christmas,” Young says. “It’s
crazy.”
Leni’s older brother, Thomas, says it was “mind-
blowing” to see the immediate results of his sister’s
treatment with cannabis oil. “She was a zombie when she
came here,” he explains. “You can’t argue with what you
see.” Thomas, 23, now helps Jacques out at the farm.
“It’s beyond anything we ever could have imagined,”
Amy Young says of the effects of the oil. Leni’s seizures
have reduced from several big ones a day, strung together