Haleigh’s Hope
When we first met Haleigh she had been given only a few months to live. Now, 3 years later, she is getting better every day. Learn more about the girl who stole our hearts and helped make history in her home state of Georgia.
Janea and Brian Cox met at their job as firefighters in their home state of Georgia. Eventually, they decided to get married and start a family. After years of unsuccessfully trying to get pregnant, doctors informed the couple that Janea’s diabetes would prevent them from being able to have children. Soon after they had given up hope, Janea learned that she was pregnant. To the Cox’s, it was a miracle. Little did they know at the time what a miracle their precious child would turn out to be.
The Diagnosis
Haleigh Cox was born on July 19, 2009 – a perfectly happy and healthy little girl. When she was around six months old, her parents noticed that she didn’t seem to be developing the way that other babies her age were. When Haleigh was eight months old, she had her first seizure. A CT scan revealed extensive damage to young Haleigh’s brain, possibly from a stroke that she had suffered while in the womb. Her doctor delivered the news that no parent ever wants to hear:
Haleigh has intractable epilepsy and Cerebral Palsy. She will never walk or talk. Her seizures will continue to get worse until they can’t be controlled by medicine. She will live a horrible life.
Janea and Brian were determined to do everything in their power to fight this cruel sentence for their daughter. They first turned to the Cord Blood Registry website. When Haleigh was born, they had decided to bank her blood cells. As fate would have it, the CBR was running trials for babies with brain injuries and Cerebral Palsy. The results from the Cord Blood infusion were encouraging. Haleigh was eating better. She was smiling and laughing. But the initial optimism quickly gave way to disappointment when she began having seizures again. This time it was a different, more dangerous, type of seizure called infantile spasms.
Infantile spasms (IS) is an extremely rare seizure disorder.
Only about 2,500 cases are diagnosed each year. They are much more severe than a typical generalized seizure and put affected children at significant risk of developmental disability and autism.
Haleigh had to get injections of anticonvulsant medications twice a day. When those stopped working after six weeks, she was put on a different drug. That stopped the infantile spasms, but it didn’t stop four other types of seizures that doctors discovered were coming from various parts of her brain. The Cox’s tried other medications. They tried a specialized diet. They even had Haleigh implanted with a VNS device, a sort of pacemaker for the brain, to help change her brain chemistry. But none of these options proved particularly effective.
At age 3, Haleigh was diagnosed with Lennox-Gastaut Syndrome, another difficult-to-treat form of childhood-onset epilepsy. And if that wasn’t enough, she was diagnosed with a mitochondrial disorder and Type 1 Diabetes.
Haleigh failed at least ten anti-epileptic drugs. She was on Onfi, Depakote, Banzel, Valium, Vigabatrin, Klonopin and the list goes on and on. Even the smallest overdose of Onfi would cause her to stop breathing. At one point, she was maxed out on five different seizure medications at one time. Doctors added more and more mind-numbing medicines – anticonvulsants, tranquilizers; you name it. These medications came with potential side effects such as bone loss, brain shrinkage, uncontrollable rage, blindness, and death. She wouldn’t smile, she never talked, she couldn’t sit up on her own, she slept most of the day. Even with all these drugs, Haleigh still had more than 200 seizures per day. Her seizures were so bad that she damaged her front eight teeth and had to have them pulled. She was a prisoner in her own body. Worst of all, she would quit breathing all the time. Haleigh’s parents had to use their CPR training to keep her alive more times than they can count.
On January 10, 2014, things came to a head. When Janea was getting everything ready for bed, she noticed that Haleigh had stopped breathing. Her skin was gray, and her lips were blue. As they waited for the paramedics to arrive, they tried CPR repeatedly, but nothing worked. It wasn’t until they were in the ambulance on the way to the hospital that they were finally able to resuscitate Haleigh.
Haleigh spent the next two months in the PICU. She stopped breathing at least two times a day while she was in there. Her prognosis was grim. Doctors told the Cox’s that Haleigh had only two to three months to live.
As they sat in the hospital by Haleigh’s bedside, the Cox’s recounted all the treatments that they had tried. 14 different medications; cord blood infusions, VNS implant, specialized diet, a hyperbaric chamber. They had tried every treatment option, every medication, that doctors had recommended and nothing had worked. The only option they hadn’t tried was a new marijuana-derived medicine called CBD that Janea had discovered while searching online for anything that could help her daughter.
Moving to Colorado
The decision wasn’t easy. To get access to this potentially life-saving medicine, Janea and Haleigh would need to relocate to Colorado – where marijuana was legal – while Brian remained in Georgia working to support the family. There were also concerns about potential side-effects. But Janea and Brian did their research and determined that the possible side effects of cannabis oil to Haleigh’s brain were not near as scary as some of the pharmaceutical drugs that she had been given. At that moment, after exhausting all other options, it seemed like Haleigh’s last resort.
On March 14, 2014 – as soon as Haleigh was released from the hospital – the family packed up and moved to Colorado. Haleigh had 200+ seizures on the flight out there. Time was not on her side.
When the Cox’s arrived in Colorado, the first person to meet them was Jason Cranford. Jason is the founder of the Flowering H.O.P.E. Foundation. The foundation facilitates safe access to specially formulated medical cannabis oil to those suffering from Cancer, Crohns, Epilepsy, MS, and other serious ailments. Jason connected the family with doctors and provided Haleigh with free cannabis oil.
Cannabis is still classified as a Schedule I drug by the DEA. This classification has long prevented scientists and researchers from studying the therapeutic effects of the plant. Determining the right formula, dosage and schedule for Haleigh required a substantial amount of trial and error. Still, the results were immediate. On March 19th, Haleigh tried her first dose of the cannabis oil that would later bear her name. Four days later, Haleigh had a day with only four seizures. And just a month after that, Haleigh had her first seizure free day in several years.
There were some bad days as well, many of which were related to the painful withdrawal effects that Haleigh experienced while getting off her seizure meds. But the 18 months spent in Colorado under Jason’s care provided a dramatic improvement in Haleigh’s condition. She went from 200+ seizures per day to 2-3 on a bad day. In that time, she had 48 entirely seizure free days. She smiled and laughed for the first time in years. She spoke her first words, after waiting for almost six years. Today, she is able to consume food by mouth rather than through a feeding tube. She no longer requires a ventilator to breathe for her at night. Most importantly, her parents have been able to wean her off almost all the pharmaceuticals that left her in a fog for so many years.
Recounting her time in Colorado, Janea had this to say:
“How does someone say goodbye to the state that saved their daughter’s life? When I think of Colorado, my heart is filled with so much HOPE and happiness. My child was practically in a coma 23 hours a day before we moved. She never looked at me and never smiled. Now she is talking, staying up for 14 hours a day, sitting on her own up to 15 minutes at a time – all with the biggest smile on her face. I realize we don’t know the “side effects” of cannabis oil on young children but please look up the side effects for Depakote and Onfi. Would you put your 3-year-old on high doses of either one of those drugs? So far, the side effects of cannabis oil for my child are excessive smiling, alertness, talking, more muscle tone, fewer seizures, and thriving.”
Haleigh’s Hope Act
Despite the incredible improvements in Haleigh’s condition while in Colorado, all the Cox’s wanted was to be able to return home to Georgia and be reunited as a family. But to do so, the laws in Georgia would need to be changed to allow them to legally possess the medicine that Haleigh so badly needed. One man was instrumental in this fight.
That same night in the hospital when Janea decided to take Haleigh to Colorado, she sent an email to her state representative, Allen Peake (R-Macon), asking him to help legalize medical marijuana in Georgia. Rep. Peake didn’t know that Janea had just watched her daughter almost die in front of her, that she had just given Haleigh CPR to resuscitate her, but he understood the urgency. He responded that night and visited the family in the PICU a couple of days later. He sat with them and listened to their concerns. He empathized with a family in so much pain. And at the end of their meeting, he looked Haleigh in the eyes and told her that he would fight for her.
Peake’s first attempt at passing medical marijuana legislation, during the Georgia legislative session in 2014, was rebuffed. But he tried again during the 2015 legislative session. And this time, because of his strident advocacy, and the powerful story of Haleigh Cox and others like her, the bill passed in the House and Senate by an overwhelming margin.
On April 16th, 2015, Georgia Governor Nathan Deal signed House Bill 1, also known as the Haleigh’s Hope Act, into law. Janea remembers how she felt that day:
“I can still look back on the day that HB1 went to the house floor for its final vote and get goosebumps. We knew the fight wasn’t over, but parents of sick children and families with loved ones that were suffering could finally get some relief. I can now give Haleigh her life-saving medicine in GA without worrying about losing her to state custody and Brian and I ending up in jail.”
Haleigh Today
On September 28, 2015, Haleigh finally returned to Georgia. But not before a fire destroyed the family home a week before they were initially planning to return, adding yet one more injustice to a family that had already suffered so many. Still, the Cox’s are a resilient bunch. Nothing was going to stop them from returning home to their family and their community.
Back home, Haleigh continues to improve day by day and continues to prove the doctors wrong. She even recently spoke her first sentence after seven years, “Hi momma!”. None of it would have been possible without medical marijuana. Janea describes it best: