Haleigh ' s hope- Janea Cox’ s unexpected journey to the front lines of Cannabis
Advocacy By Adam Kincaid Atlanta Journal-Constitution 5.3.17.( http:// specials. myajc. com / haleigh /) Her husband eyed the TSA inspectors nervously while Haleigh sat silently in her wheelchair, a floppy red bow on her head, staring out at the world with big brown eyes.
Janea Cox, her husband Brian, their 7-year-old daughter Haleigh and their chocolate Lab Kala left their Forsyth home in December 2016 for their semi-annual trip to Colorado. They flew into Denver and made their way toward Colorado Springs in a rental car, squeezing the three of them, a wheelchair and the dog into the small, four-door sedan. A handicap-equipped van would have been better, but the economy ride was what they could afford. The family checked into a budget hotel and went to sleep; not that they ever sleep well, or for very long. Young Haleigh was up through the night, as usual. She has epilepsy so severe she requires constant oversight. For most of her life, her young brain hasn’ t been seizure-free long enough to develop normally. So she gets around in a wheelchair, receives nourishment through a feeding tube and is barely able to communicate. Haleigh is a prisoner in her own body. She also has type one diabetes. Kala is a service dog specially trained to check blood sugar levels by smell and alert handlers of spikes— to do what Haleigh cannot do for herself, to speak out when she needs help.
These family trips are not fun. They stretch the Coxes to their financial limit. And they take everything Janea and Brian have just to get to the offices of the Flowering Hope Foundation, where botanist Jason Cranford dispenses his specially formulated cannabis oil, Haleigh’ s Hope, named after his special client. Janea believes it is the only thing that has kept her daughter alive. The cannabis oil isn’ t the only thing named after Janea and Brian’ s daughter. Her name also appears on the law— Haleigh’ s Hope Act— enacted in 2015, which permits registered patients in Georgia to possess up to 20 ounces of low-THC oil. But because it remains illegal to produce or dispense the oil in Georgia, the Coxes must go to Colorado to buy it. The next morning, Brian packed the bags and the chair and the dog back into the rental car and the family returned to the Denver airport where, as calmly as she could, Janea Cox, 35, quietly committed a federal crime by smuggling 10 twoounce vials of the oil out of Colorado.
Before Georgia’ s medical marijuana law went into effect, Janea and Haleigh lived in Colorado for a year while Brian stayed in Georgia to work. He would visit every month or so.
2: A life sentence Three years earlier, in January 2014, something happened that changed Janea’ s life forever.
On that particular evening, she did the same thing she did every night. She slipped a medical vibrating vest onto 4-year-old Haleigh’ s motionless body to loosen up the mucus that routinely built up in her lungs. She plugged one end of a black vacuum hose into the vest and the other end into a boxy plastic machine. When Janea flipped the switch, the machine sprung to life, sucking air up from around its vents and pushing it pressurized into the hose and vest. An instant later, Haleigh began to vibrate.
Haleigh was diagnosed with intractable epilepsy when she was eight months old. Intractable is a doctor’ s word for untreatable. She took a daily regimen of more tranquilisers and anticonvulsants than is recommended for a grown adult. And still Haleigh suffered more than 200 seizures a day; every five minutes or so, day and night. She was paralysed by her seizures, unable to build the neural pathways that would allow her young brain to move a leg or an arm, or to speak. All of her baby teeth had to be removed so she wouldn’ t suck them into her lungs as they loosened or bite her tongue off.