Struggle lingers for family of Haleigh Cox, namesake of Ga. medical marijuana bill

CULLODEN -- Janea Cox rarely sleeps and always has plenty to keep her up at night.

Her daughter, Haleigh, usually wakes from her continual grogginess at about 7 p.m. and often doesn't wind down to sleep until 4 a.m.

"I think I've got a little vampire, here," Cox said Thursday morning as she was trying to rouse the 6-year-old.

"How did that happen?" she asks Haleigh in a higher, sweeter tone than her normal speaking voice.

Intractable epilepsy left the girl practically motionless from brain damage after thousands of seizures.

"Since she can't move on her own, I always have to help her move, help her play, pretty much do everything," Cox said. "There's never a minute that Haleigh is really out of my sight."

Cox's husband, Brian, works out of town as a firefighter and is often away from home.

Lugging Haleigh everywhere is not Cox's only burden.

She worries what will happen if she is arrested while illegally transporting medical marijuana back home to Georgia.

"Who would get Haleigh? If you get my child away from me, she's not going to live," said Cox, the day after Georgia's Medical Marijuana Commission rejected growing cannabis in the Peach State.

"Oh, Georgia. We've got a fight on our hands again, don't we?" said Cox, with a little jiggle for the 40-plus pound girl. "If you grow it here, you're not making us commit a felony."

The Coxes' plight led to the passage of Haleigh's Hope, the law sponsored by State Rep. Allen Peake, R--Macon.

Haleigh is one of about 415 people to receive a state-issued medical cannabis card to possess up to 20 fluid ounces of liquid medicine to treat one of eight specific diseases.

Before it was legal to have the medicine in Georgia, Cox moved her daughter to Colorado for treatment.

"Cannabis oil definitely saved her life," Cox said.

Haleigh takes a tiny drop of a cocktail of various cannabinoids, including THC, which is illegal, so Cox can't find anyone to ship it to her.

"We're not using it as a way of getting high, we're using it as a medicine," she said.

Since Haleigh has been taking the drops, she has been speaking more and gaining more motor skills.

"Without that, I wouldn't have as many smiles," Cox said. "I see her happy and smiling and it reminds me of why we made the move to Colorado and why we fought so hard for the other kids here in Georgia to be able to get this medicine."

In July, the week before Haleigh and her mom planned to come back to Georgia, Brian Cox was mowing the lawn when a passerby stopped to tell him the family's home was on fire.

"It's hard to process... as if we weren't going through enough we had to add a whole 'nother issue to to our list of problems," she said. "Everything in that house reminded me of Haleigh. That's where Haleigh stood for the first time by herself, and the first time she sat, and that was the home we brought her home to when she was born. So losing that house is almost like losing Haleigh all over again."

All of the pictures are gone of Haleigh's life before she was deathly ill.

"It's just those small memories that kinda kept pushing me forward," Cox said.

Anything that could be salvaged had to be scrubbed cleaned due to the girl's weakened immune system.

Cox has only recently been able to go by the old homestead.

"Coming home, not to our home, has been difficult for all of us," she said.

The family's struggle was not lost on Tammie Pierson.

Saturday, Pierson is opening up The Barn in Culloden to host a benefit at the event venue in Monroe County.

From 11 a.m. until 2 p.m., they will be selling crafts, baked goods, some furniture and offering backdrops for holiday photos.

"I'm just thinking, all the sleepless nights that she has to go through, if I had to go through that for a really long period of time, it would be really rough," Pierson said. "I just wanted to do something to show her support."

All proceeds of the sale at 423 Norwood St. will benefit the Cox family who are slowly rebuilding their home.

They hope to have it framed by the end of the year while they stay in a relative's house.

"The community is where we draw a lot of our strength," Cox said. "I don't know what we'd do without the community behind us, and the people there that are here to help and offer a lending hand when we most need it. We're not good at asking for help."

Cox and her daughter both have diabetes and rely on a service dog to keep them out of crisis.

Even as Cox continues to fight to make medical marijuana a more viable solution for Georgians, she finds a silver-lining to those all-nighters.

"I'm sure I'll look back on these days and realize God had a plan for her not to sleep, and he really wanted her to stay up so I could spend as much time with her as I could."

To contact writer Liz Fabian, call 744-4303 and follow her on Twitter

This story was originally published December 10, 2015 at 2:14 PM with the headline "Struggle lingers for family of Haleigh Cox, namesake of Ga. medical marijuana bill ."