SPRINGS, Colo. — The Swann family moved from Alabama to
Colorado last fall to try save their daughter’s life with
marijuana. It appears to have worked. And in the process, the
Swanns and others like them have changed laws across the
country so more children can have the same chance.
Allie Swann was having up to 100 seizures per day that years
of treatments, including surgery to remove part of her brain,
and debilitating drugs had not helped.
was on the same stuff they use for lethal injections in
Alabama," her father, Butch Swann, said. "It couldn’t
came to Colorado. Like 115 other marijuana refugee families,
as they call themselves, from 43 states, they left family,
jobs and homes so they could try oil made from a special
strain of cannabis that reportedly quelled the seizures in a
handful of kids in Colorado Springs.
federal laws making medical marijuana research nearly
impossible, none of the oil’s healing properties have been
scientifically verified, and the families have sometimes been
dismissed as desperate kooks.
months after the first big group of children started using the
oil, many families like the Swanns say they see remarkable
improvements. A handful of families have returned home, some
because of the strain of having uprooted to move here, others
for other reasons.
of the kids, their seizures are dropping in number and
intensity, and kids long lost to their medical conditions —
or the powerful drugs used to treat them — are rediscovering
the success has spread across the country, prompting the
medical establishment to reassess cannabis and legislators to
spring, 18 traditionally conservative states, mostly in the
South and Midwest, introduced medical marijuana bills narrowly
tailored to epileptic children. Seven have been made law, with
several more close to passing.
Swann spoke repeatedly to radio and TV stations in Alabama
about how the oil, which cannot get users high, has helped his
daughter and could help thousands of others in the state.
State legislators approved a bill giving children access to
the oil unanimously.
hope this Alabama-led medical study can bring relief to
children," Alabama’s governor said at the signing.
Swann laughs when asked about it.
wouldn’t have thought in a million years Alabama would pass
medical marijuana in any form," he said. "But I
think people can see this is different."
soon, he said, his family can return to Alabama. But in the
meantime, he is enjoying a new life with his daughter.
who has the mental capacity of a 3-year-old, used to fly into
rages daily, screaming for hours and biting her hands until
they bled. Now she has a new air of calm contentment. Her
hands have healed. An EEG brain scan from a year ago showed a
nonstop quake of seizure activity. An EEG done a few weeks ago
in Denver shows none.
recent warm evening she sat on the front steps of the family’s
rented house in Fountain, Colo., with her father, watching her
younger brothers play ball.
is something we could never do before, just sit and enjoy
life. Her life was just a storm," Butch Swann said.
"Now we can take her shopping, go out to eat, just be a
family together. It’s the answer to our prayers."
leaned over and silently gave him a kiss.
are now 180 children in Colorado taking the oil, with
thousands more on a waiting list. Other kids in Colorado and
19 other states where medical marijuana is legal are using
similar oils made from other cannabis strains.
is not a magic potion that suddenly returns these kids to
perfect health, but many parents say it controls seizures
better than anything they have tried.
handful of kids who tried the oil saw no benefit, the vast
majority have seen seizures significantly reduced with no
negative side effects, said Dr. Margaret Gedde, a Colorado
Springs physician who is tracking the young marijuana
patients. Of the 47 patients who started taking the oil this
fall, 28 percent reported more than 80 percent reduction in
seizures, she said. Another 49 percent reported some reduction
in seizures and enough other benefits, including improved mood
and awareness, that they continue to use the oil. Another 23
percent either stopped using the oil because it made seizures
worse, was ineffective, or because they moved back to a state
where the oil is banned.
is what is called anecdotal evidence, but it is also very
real," said Gedde, who now has 195 pediatric marijuana
patients. "We have 78 percent of patients benefiting from
this. Often it allows them to get off more dangerous
medications. Clearly it has a role in treating epilepsy."
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Foster is one of those who returned home.
14-year-old daughter Lydia was having up to 12 seizures per
day when they left their farm and half the family in rural
Pennsylvania to come try the oil. Lydia’s seizures soon
dropped by half. But, her mother said, the financial strain
was too great. While insurance pays for pharmaceuticals that
did not help Lydia, it won’t pay for cannabis, for which the
family paid $500 a month.
it was a disaster, but it also cut our family in half,"
said Debbie Foster. "It feels like you are losing some
kids to save one."
Fosters returned to Pennsylvania in March, where Lydia is
trying to get the same benefit from a much less potent hemp
oil that is legal in the state. "We’ll just have to
wait and hope they change the law here," Debbie Foster
every family that leaves Colorado, more move here every week.
The Stanley brothers, five local brothers who grow Charlotte’s
Web, the special strain of marijuana, now have more than 5,000
people on the waiting list, including 500 international
patients from 54 countries.
same time, clinical trials of the oil have started in New
York, which means a version of the drug could eventually be
approved by the Food and Drug Administration.
Epilepsy Foundation this spring called for all epileptic
children to have access to cannabis, saying "Nothing
should stand in the way of patients gaining access to
potentially life-saving treatment."
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cannabis for children remains controversial. "I think
people see us as some cult or something. They don’t
understand there was no other option. Our kids will die
without help," said Heather Jackson, who organizes
distribution of the oil for the Stanley brothers, and whose
severely epileptic son, Zaki, has gone 18 months without a
seizure since starting on Charlotte’s Web.
spoke to The Gazette in the play area of a Colorado Springs
McDonald’s where her 10-year-old son, once near death, was
sprinting up tunnels and diving down slides.
dismiss all the early successes as anecdotal evidence,"
she said, looking at her son. "If this is anecdotal
evidence, we will take it."