Christine Green
New Member
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."
News Moderator: Christine Green 420 MAGAZINE ®
Full Article: Connecticut advocates cheer passage of medical marijuana law for minors
Author: Pam McLoughlin
Contact: letters@nhregister.com
Photo Credit: Arnold Gold-New Haven Register
Website: New Haven Register: Breaking News, Sports, Business, Entertainment & New Haven News
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."
News Moderator: Christine Green 420 MAGAZINE ®
Full Article: Connecticut advocates cheer passage of medical marijuana law for minors
Author: Pam McLoughlin
Contact: letters@nhregister.com
Photo Credit: Arnold Gold-New Haven Register
Website: New Haven Register: Breaking News, Sports, Business, Entertainment & New Haven News
