Pubdate: Tue, 17 Dec 2013
Source: Star-News (Wilmington, NC)
Copyright: 2013 Wilmington Morning Star
Author: Molly Parker


U.S. Rep. Walter Jones has taken up the case of a number of desperate 
North Carolina parents who are hoping state lawmakers will legalize 
medicinal marijuana for children with uncontrollable seizures.

In a statement, Jones said that several North Carolina parents of 
children with life-threatening illnesses have come to him with a 
"compelling argument that political leaders in North Carolina should 
consult with medical professionals to determine the efficacy of the 
use of medical marijuana in certain instances."

The Republican congressman, whose 3rd District covers parts of Pender 
and New Hanover counties, said these parents have "exhausted all 
other available options to provide relief for their kids."

"I believe this issue should certainly be studied at the state level, 
and I encourage our state elected officials to give this, and other 
potential treatment options, the attention that they deserve."

In an interview with the StarNews several weeks ago, Gov. Pat McCrory 
said he didn't know much about the issue, but he promised to study it 
and get back to the paper. His office, though, has since refused on 
numerous occasions to comment on his position regarding legalizing 
medicinal marijuana for children with epilepsy.

"If there isn't legislation, we will pass on commenting," said Ryan 
Tronovich, McCrory's spokesman.

In September, the StarNews profiled several parents of children with 
uncontrollable seizures who have joined together via a Facebookpage 
to advocate legalizing a treatment option in North Carolina that has 
shown some promise for children with epilepsy in other states. That 
group includes the Wilmington family of Matt and Annetta Saggese, 
both local educators, and their young daughter Netta.

"The courage of some politicians to do the right thing can very 
literally save children's lives," Annetta said via email Monday.

For children, the marijuana is taken orally and not smoked. The 
strain given to children is low in tetrahydrocannabinol, or THC, the 
component of marijuana that's psychoactive, and high in cannabidiol, 
or CBD, which has been shown to have medical qualities.

Another one of the parents advocating for legalization of medicinal 
marijuana for children in North Carolina is Liz Gorman of Raleigh. 
She's been at the forefront of many of the discussions with political 
leaders in recent weeks.

"I don't feel we've gotten as far as we've wanted to" in talks with 
politicians, she said, but added that she had a "fruitful 
conversation with Congressman Jones in September."

"He understood the issue we were facing with our kids and felt that 
CBD oil did show promise in children with severe epilepsy, given that 
it didn't have psychoactive properties."

Though it's a state, not federal, issue, Gorman said Jones offered to 
help facilitate meetings with members of the North Carolina House and 
Senate to discuss it.

"That is what we're looking forward to getting going sometime soon," 
she said. "I had a meeting yesterday with a North Carolina 
representative that went quite well, and a lot of people have spoken 
to their representatives or staffers, and a lot of people are working 
on it right now. I'm hopeful we're actually going to get somewhere, 
get some momentum behind us."

Gorman said she's hopeful for legislation in the short session that 
begins in May.

But she's not waiting for that time. Gorman is moving to Colorado 
with her daughter Madeline on Thursday. Her husband will stay in 
Raleigh because of his job.

Madeline, 7, suffers from catastrophic epilepsy and functions at the 
level of a 11/2-year-old. At the worst, she was having 300 to 400 
seizures a day, or seven to eight seizure "clusters" lasting up to 40 
minutes each. Madeline had experienced some reprieve from her 
seizures following a risky brain surgery, but the seizures are 
returning, Gorman said.

"So we're going to move on to Colorado," she said. "I wish that it 
were available here but I can't wait months in hopes we can address 
it during the short session, so we've decided to go on out there and 
get her treated there."

Gorman said she'll continue the fight from afar and hopes she can 
eventually return home.
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