Pubdate: Tue, 31 May 2016
Source: New Haven Register (CT)
Copyright: 2016 New Haven Register
Contact:  http://www.nhregister.com
Details: http://www.mapinc.org/media/292
Author: Pamela McLoughlin

ADVOCATES LAUD 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 may cannot use products that smokable, inhalable or vaporizable 
and only for certain severe conditions.

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."

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, 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  ---
MAP posted-by: Jay Bergstrom