Friday, April 25, 2014
Dori Lovell never smoked marijuana, and never thought she would one day support its use.
But in March the Summerville native found herself in South Carolina’s State House, doing just that.
“I am probably the last person I ever thought would be standing in the State House in Columbia, pushing for this,” she said.
Lovell’s grandson, Julian, was born with an amount of brain damage that leaves the now 3-year-old boy limited with what he can do with his body.
Julian was born unable to swallow or suck. Surgery was performed to put him on a feeding tube – a “tough call” made by his mother, Lovell’s daughter, Amanda DeNobrega, in an effort to keep him alive.
He has been on the feeding tube ever since. He does not walk or talk; he cannot roll or crawl. He endures 50 to 60 seizures a day.
These are reasons contributing to why Julian’s family now lives in Colorado. They moved in March.
Lovell, still a Summerville resident, has been lobbying for medicinal marijuana to be legalized in South Carolina. In March a Senate panel advanced a bill that would seek an exemption for a type of marijuana extract, called Cannabidoil (CBD) oil to help people who suffer from severe forms of epilepsy.
Lovell is hoping to make that bill broader. She spoke at the Senate panel on behalf of her grandson.
Now Julian’s family is still in Colorado, where medicinal marijuana is legal. Julian took his first dose of CBD oil on April 14. He receives his dosage in the forms of an “itty bitty” droplet four times a day via syringe. As he gets bigger and older it will go through his feeding tube – although his family is optimistic he will one day be able to swallow on his own.
In a matter of days it is hard to determine if the dosage has taken any affect on Julian, but from what Lovell has heard from her daughter, Julian does seem to be more alert.
“Julian was kind of like a ragdoll,” she said. “I don’t want to sound ugly about my own grandchild but he was – he just kind of laid there. You couldn’t really get a reaction. Even if he makes eye contact we will be thrilled because this is a child who could not even make eye contact.”
Statistically, based off other families who have moved to Colorado for similar reasons, CBD oil is supposed to help Julian’s seizures. Now Amanda DeNobrega is “a prisoner” of Colorado because she cannot move through other states where marijuana is illegal.
While Lovell is supportive of the usage of CBD oil she does not want to stop there. She wants the bill to be broader.
“CBD oil is a wonderful thing,” she said, “but CBD does not necessarily help everybody. It’s proven to help children and adults with seizures, but it might not do anything for a child with Leukemia. That child might need full-blown marijuana. The whole plant has to be legalized to produce all the different qualities and strengths from that plant. CBD is just one part of it.”
Originally Lovell dismissed the idea of using marijuana to help her grandson – even when her daughter started sending her articles and videos about the positive effects it could potentially have on Julian. After researching herself Lovell began to reconsider.
“There were children just like Julian who were on feeding tubes, couldn’t walk, couldn’t talk, and now you wouldn’t know them from the normal child down the street,” she said, adding that she feels that it could go as far as curing such children – not just alleviate their symptoms.
Lovell feels a big part of the struggle to pass the bill is because of the state’s conservative political outlook.
A similar bill is making its way through the House as well, sponsored by Rep. Jenny Horne, R-Summerville. The bill calls for legal possession and use of CBD oil. The bill would also allow all hospitals to be able to study/prescribe it.
Horne told The Summerville Journal Scene that the bill, dubbed “Julian’s Bill” came about after Horne learned Julian’s story. Horne said she would not want more families to have to move out of South Carolina to Colorado for such treatment.
“CBD oil is still being experimented but it’s showing great progress,” she said.
Right now Julian’s Bill has met the crossover date (May 1).
“I’m optimistic it will be signed before June,” Horne said. “I’m optimistic that it will reach the governor’s desk. I don’t anticipate she won’t sign it.”
Lovell, too, is staying hopeful.
“At least we’ve got the door open and people are talking about it,” Lovell said. “If we can get everyone to talk about it, it’s always a step in the right direction. Does it need a lot of tweaking and lot of homework? Absolutely.”
That is not to say Lovell necessarily supports recreational use of the plant. In Colorado, both medicinal and recreational use of marijuana is legal.
“That is not my goal,” she said. “I want it to be like Colorado where you go to a doctor, you meet criteria, they have to determine you have a true need for this, and then you are given a registration card that says ‘marijuana card.’”
The CBD oil does not give the user the “high effects of marijuana – that sensation is found in the chemical THC.
“You get the healing effects, not the high effects,” Lovell said.
“I guess it’s like aloe Vera where you would use the juice for the wound – but you wouldn’t eat it.”
Lovell and her family remain optimistic that eventually it will be legalized in South Carolina, and still hold out hope for not only stopping his seizures, but healing his brain as well.
“I haven’t gotten any word yet on where our bills are sitting,” she said. “I would like to hope Gov. Nikki Haley would sign it, but it’s hard to say. We’ll just keep pushing it.”