Pubdate: Sun, 26 Oct 2014
Source: Miami Herald (FL)
Copyright: 2014 Miami Herald Media Co.
Author: Audra D.S. Burch


Nicolas Peruyero was 8 years old, blind and unable to walk or talk
when his mother saw a documentary about the benefits of medical
marijuana and its promise to reduce seizures.

For a few moments, Nancy Peruyero imagined what Nicolas' life might be
like without the relentless myoclonic seizures every day. And for the
first time, she allowed herself to hope, an emotion she had rarely
felt since that August afternoon in 2009 when her youngest son was
diagnosed with Batten disease, an unusual neurological disorder marked
by seizures, loss of motor skills and mental impairment. His life
expectancy with the disease is no more than 12 years. He turned 9 on

"We want to try medical marijuana in hopes that it will calm his
seizures and help him become more alert and sleep better," said
Peruyero, 41, who first watched the CNN documentary Weed about a year
ago. "We want to be able to have all our options. For us, this is a
quality of life issue. What parent would not do everything they could
to help their child?"

Politics aside, for families with medically needy children, Florida's
march into the world of medical marijuana - fraught with differing
opinions by legislators, medical professionals and patients, and
little scientific evidence - is personal, built upon the anecdotal
evidence of cannabis' healing properties. It's not a miracle drug,
they say, but rather a compassionate alternative treatment.

These families are faced with balancing the hope that expanded medical
marijuana will become available if Florida voters pass a
constitutional amendment on Nov.4 and the daunting reality that even
with that approval, the marketplace could be a long time coming.

For Peruyero, doing "everything" for her son means access to the
so-called Charlotte's Web non-euphoric strain of the drug, approved
for medical use by the Legislature last spring for children with
cancer, intractable seizures and other serious conditions. Everything
also means the approval of Amendment2, which would allow other strains
of medical cannabis to be used. Without the range of strains that
Charlotte's Web and Amendment2 would jointly provide, some families
are even considering leaving Florida for other states such as Colorado
and California where medicinal pot is allowed.

"We know this is experimental in the sense that we don't know if
Charlotte's Web will help us. But we will try," Peruyero said. "What
we want is the ability to be able to try the other types, too."

The possibilities of medical marijuana have made advocates of these
parents, some gathering signatures to put the measure on the ballot.
Some are part of Facebook-powered circles where the posts and
discussion are all about the latest research, the drug's therapeutic
benefits and personal stories of children already being treated with
various strains in other states - as chronicled in the documentary
Weed. Dr. Sanjay Gupta's CNN special, which first aired in August
2013, featured Charlotte Figi, a little girl in Colorado who was
having having 300 seizures a week. She began using medical marijuana
as a treatment, and her seizures were reduced to two or three a month.

But there is still hesitation among some medical professionals who say
the science has not caught up with the movement.

"I don't want to have children with these seizures or want their
families to be faced with that kind of pain," said Dr. Judith
Schaechter,interim chair of Pediatrics at the University of Miami
Miller School of Medicine. "And I know these families are hoping this
is the right thing to do. But I also want to be cautious and use
science and clinical trials first to see what we are working with."

With so many states considering legalization, the American Epilepsy
Society issued a position statement: "The recent anecdotal reports of
positive effects of the marijuana derivative cannabidiol for some
individuals with treatment-resistant epilepsy give reason for hope.
However, we must remember that these are only anecdotal reports and
that robust scientific evidence for the use of marijuana is lacking.
The lack of information does not mean that marijuana is ineffective
for epilepsy. It merely means that we do not know if marijuana is a
safe and effective treatment for epilepsy..."

The use of medical marijuana is legal in 23 states, including Florida,
and the District of Columbia. Florida joined the movement with the
passage of the Compassionate Medical Cannabis Act earlier this year.
The new law allows five medical marijuana dispensaries in the state to
cultivate marijuana low in tetrahydrocannabinol, or THC, the chemical
that provides a high, but high in cannabidiol, or CBD, which can calm
seizures. Once the dispensaries are licensed, the plants will be
processed into an oil form of the strain called Charlotte's Web and
taken orally.

The amendment on the November ballot is much broader. The Florida
Right to Medical Marijuana Initiative, commonly known as Amendment2,
was championed by the United for Care grassroots campaign. Doctors and
patients must be certified before receiving marijuana through
authorized dispensaries.

The amendment, which requires a 60 percent majority to become law,
names nine eligible medical conditions: cancer, glaucoma, human
immunodeficiency virus infection (HIV), acquired immunodeficiency
syndrome (AIDS), hepatitis C, amyotrophic lateral sclerosis (ALS) or
"Lou Gehrig's disease," Crohn's disease, Parkinson's disease, and
multiple sclerosis. It also includes other conditions in which a
doctor could determine that the use of medical marijuana would likely
outweigh its potential health risks.

Those against the amendment say that its broad language and loose
regulation could allow doctors without appropriate training to
prescribe the marijuana for medical uses. Others believe passage of
the measure would make way for widespread abuse of the drug. Opponents
include the Florida Medical Association. But if the amendment passes,
the Florida Legislature ultimately will decide what rules to impose to
protect the public in the distribution of medical marijuana.

Even if both laws are in place, it's unclear how long it will take
before the medication is available. The earliest is possibly next
summer after the regulations are established and nurseries are
selected to begin harvesting the marijuana crops.

"My daughter suffers every day, and there are lots of other families
in the same situation. It's painful to watch and painful not knowing
if the next seizure is the one that kills her," said advocate Seth
Hyman, among the most vocal parents supporting both measures.

Hyman, whose daughter has a rare genetic disorder, testified before a
Florida House subcommittee in January. "This is a really long process,
and we have to wait while our children are in jeopardy. And God forbid
Charlotte's Web doesn't work and Amendment2 doesn't pass giving us
other strains to try. Then what?" Inspired to try

Every week, Jose Buraschi makes the hour-long drive from his home in
South Miami to a pediatric nursing facility in Plantation to visit his
son, Alessio. Though the 6-year-old is asleep on this visit, Buraschi
holds his son's hand and talks to him about the family, about his
mother and two brothers, about a life without him there.

"I want to believe that he knows our voices, that he knows who we
are," Buraschi said, tearfully.

Alessio had his first seizure at 3 months old. His condition
deteriorated until he was having 50 to 300 seizures a week. Doctors
eventually diagnosed him with multiple conditions including a brain
disorder, cerebral palsy and scoliosis. He is a quadriplegic,
partially blind and unable to talk. Last year, his parents moved him
to Kidz Korner so he could be monitored around the clock.

"He slept in the room with us, right by us. Twice, we woke up and
found he had vomited on himself. Our greatest fear was he would choke
and we would lose him," said Buraschi, a father of three boys
including Alessio.

Buraschi became a believer of medical marijuana after learning about
Charlotte Figi, the Colorado girl whose parents used the extract of
marijuana plants to treat her Dravet syndrome. Her seizures subsided,
and Charlotte became the face of the movement and inspired the
Charlotte's Web brand name of a particular high-CBD/low-THC strain.

"Charlotte's story caught my eye. She had seizures. Alessio has
seizures, so I am thinking maybe it will work," said Baraschi, who
helped to gather signatures for the petition to put Amendment2 on the

Alessio is taking nine medications. He has already been on a special
diet and had a pacemaker-like device implanted in his chest to reduce
seizures. Doctors have told his parents that brain surgery is not an
option, either.

"There is a chance it might not work," Buraschi said. "Our last resort
really could be marijuana. We have heard so many successful cases,
it's something we have to try for our son."

For Jacel Delgadillo, Nov.4 will determine her next address. The Miami
mother of a toddler with Dravet Syndrome - a form of intractable
epilepsy - is planning to move to Colorado Springs if Amendment2 does
not pass.

"I don't want to leave my home and my family, but I feel like I have
to be able to give Bruno a fighting chance," said Delgadillo, who also
has an 8-year-old daughter. "It won't be easy, financially and without
the support of my family."

Bruno's story echoes the others: born without complications, then
sudden onset of seizures, followed by an anxiety-ridden stretch as
doctors tried to determine what was wrong. Eventually, the diagnosis
of something neurological in nature and an uncertain prognosis.

After several trips to Colorado, Delgadillo applied for and received a
medical marijuana license and card in April, which allows Bruno to be
treated with the oil to reduce his seizures. Last week, she traveled
to California to research that state's cannabis program.

Since he was three months old, Bruno has been on a series of
medications. Developmentally delayed and now 3, Bruno cannot speak,
walk or sit up on his own. The seizures, big and small, come
throughout the days, sometimes reducing him to tears.

If Delgadillo moves to Colorado, she will become a medical refugee of
sorts, joining a growing number of parents from across the nation with
sick children who believe they have run out of pharmaceutical options.

They include Francis and Cristi Bundukamara, who left their lives
behind in Miami last year - she was a nurse practitioner and Miami
Dade College professor, he was a South Dade Senior High teacher and
football coach - to have their children treated with medical marijuana.

Their two youngest children, Reggie, 15, and Miah, 14, have
dentatorubral-pallidoluysian atrophy, or DRPLA, a rare, degenerative
and terminal brain disorder. The siblings both have seizures, although
Reggie's condition is more severe. He is now unable to walk or talk
and requires constant care.

"When we first heard of medical marijuana as a treatment, we were
thinking of it as palliative. It took four or five friends calling and
emailing about it and then watching the CNN special for us to think of
it as an active treatment," said Cristi Bundukamara, 42. "I saw that
special in September. We moved in November. My son is very, very sick
- - we needed something quickly. I wasn't confident that it was going to
come to fruition in Florida. Waiting a year for it to pass and then
another year to establish the grows, we didn't have that kind of time."

Within a month of starting on Charlotte's Web oil, the seizures were
reduced in both children by about 50 percent. They were also able to
reduce Miah's medication by about 70 percent. Then the numbers leveled

"We are still trying to figure out the ratio that works for my
children. Last month, for example, we began adding more THC for Reggie
and he only had three grand mal seizures," she said. "It's truly
experimental." If not cure, a comfort

Back in Miami, Peruyero was just beginning to share Nicolas' story at
B&V Thera-Pro Associates, a center offering physical, speech and
occupational therapies, when he began to choke during a therapy
session. She quickly grabbed her portable suction machine to draw the
fluids from his mouth. "He has lost the ability to swallow due to the
illness, so all the secretions pool in his throat and then he coughs
it up eventually. We have to catch it so he does not choke," she said

Nicolas was born without complications. He was walking and learning to
speak, but at 3 years old, he suddenly became clumsy - the result of
seizures. "He would collapse and fall to the ground and pick himself
up, then fall again," she said.

An MRI showed brain atrophy, meaning a loss of neurons and their
connections. He started having seizures, small and large. It took
about a year for doctors to diagnose him with Batten disease. Now
Nicolas has lost most of his motor skills, requires 24-hour care and
takes 29 medications daily, including four to treat his seizures.

"This is a difficult stage for us with Nicolas. We know the medical
marijuana will not cure him," Peruyero said. "But maybe it will extend
his life or make it better for him during the time he is here."
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