Pubdate: Tue, 31 May 2016
Source: Register Citizen (CT)
Copyright: 2016 Register Citizen
Contact:  http://www.registercitizen.com
Details: http://www.mapinc.org/media/598
Author: Pamela McLoughlin

CONNECTICUT ADVOCATES CHEER PASSAGE OF MEDICAL MARIJUANA LAW FOR MINORS

MILFORD - Robert Fiore's childhood onset epilepsy is long under
control, but he made it his mission to legalize medical marijuana for
those under 18 in Connecticut after watching the CNN special report,
"Weed," which featured the remarkable change cannabis oil made in a
young girl with epilepsy suffering some 300 seizures a week.

I thought, "Why not bring it to Connecticut?" Fiore
said.

The bill he helped introduce and pushed through his organization
Connecticut Epilepsy Advocate, passed in the Senate, 23-11, in April
and Gov. Dannell P. Malloy signed it into law May 17. Patients under
18 cannot use products that are smokable, can be inhaled or are
vaporizable and only for certain severe conditions.

State Sen. Toni Boucher, a Republican who represents the
Westport/Wilton area, heartily opposed the bill, citing the negative
effects marijuana can have on developing minors and the lack of
significant scientific evidence.

Fiore's mission went into overdrive after meeting Kim Hearn of
Stratford, and her son, Sean, 11, who because of a severe, rare form
of epilepsy, suffers from 50 plus seizures in a day. Sean, who uses a
wheelchair, can't walk, talk or survive without a feeding tube and
pureed food. Sean takes five medications and they have huge side
effects, his mom said.

"As motivated as I am, that was another reason to push even harder,"
Fiore said, referring to Sean.

"It's amazing - I just don't have the words," Fiore said of the bill
being passed. "It's amazing we could help these other people."

Fiore, founder of Connecticut Epilepsy Advocate, a small, but mighty
group whose board consists of himself and two other people, said, "
Luckily, my epilepsy is under control," after surgery many years ago,
but his purpose was to help others.

"It's not fun at all," Fiore said. "But I had people around me who
supported me."

Decades ago when he was a child, Fiore said there was a huge stigma
attached to the disease because of the seizures.

"You can lose friends and turn off friends," he said.

While that is a little better these days, it's important to raise
awareness about epilepsy, Fiore said.

But some sufferers, like Sean, are debilitated by epilepsy.

Hearn, who along with family and friends submitted testimony to the
legislature supporting the bill, said use of cannabis oil will be
considered by she, husband Chris and Sean's doctor.

"I believe wholeheartedly," that we will try it, she
said.

Hearn said she "applauds the legislature," for giving parents the
option to use cannabis oil.

Hearn said she and her husband are always asking themselves, "Where do
we go next to find a better quality of life for Sean?

"We're always hopeful. We'll never give up," she said.

Sean has been diagnosed with Lennox Gastaut Syndrome, a severe and
rare form of childhood onset epilepsy characterized by multiple,
unstoppable seizures. His problems began at 5 months old.

"The problem with seizure meds is every bit you give him, he loses a
little of himself," Kim Hearn said.

Sean presents with the developmental abilities of a 6 month old, but
the Hearns aren't sure if it's because of his inability to express
himself due to the condition.

"I truly believe he's there and my mission is to improve the quality
of his life," she said. Hearn is always talking to Sean and answering
questions for him that she thinks he might have, just in case he
understands.

"He's happy, giving, but I haven't heard him laugh in years ... He's
got a lot of big challenges," she said.

In the CNN special report, "Weed" reported by Dr. Sanjay Gupta,
Charlotte Figi, 6, of Colorado, who has Dravet Syndrome, another
severe, rare form of epilepsy was bedridden, and developmentally
delayed by some 300 grand mal seizures a week that dropped to two to
three seizures a month once she received cannabis oil drops under her
tongue. The family got their oil from a special type of marijuana that
is high in cannabidiol or CBD and low in THC, the part that creates a
high.

According to CNN, the family has reported Charlotte - who also was
developmentally delayed by either the medications or seizures - is
making connections in her brain she hadn't made for years.

According to the Department of Consumer Protection, parents or
guardians can begin registering their children for a medical marijuana
certificate Oct. 1. Aside from severe epilepsy and uncontrolled
intractable seizure disorder, qualifying conditions for patients under
age 18 include: cerebral palsy, cystic fibrosis, irreversible spinal
chord injury with objective neurological indication of intractable
spasticity, terminal illness requiring end-of-life care.

Patients must provide a letter to the DCP from both the patient's
primary care provider and "a physician who is board certified in an
area of medicine involved in the treatment of the debilitating condition."

Fiore, who spent some three year pushing for a bill, said, "It's long,
it's tedious, it's a lot of work, but at the end of the day, it's worth it."

Anyone wishing to reach Fiore can contact him at ctepilepsy at
optonline.net
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MAP posted-by: Jo-D