7 minute read
JAGGER’S JOURNEY - THE COTTE FAMILY STORY
BY CURT ROBBINS
One of the most promising aspects of the current global wave of cannabis legalization is the hope for relief it sometimes provides to the desperate parents of extremely sick children. In many cases, conventional drugs and therapies are found to be ineffective, forcing their parents or caregivers to seek alternative avenues of treatment.
One of the alternative therapies frequently investigated is hemp or cannabis. Many patients have demonstrated significant and life-altering relief from special concentrates and oils derived from the cannabis plant. A slew of anecdotal reports—and an increasing volume of pre-clinical research studies and clinical investigations—has revealed children who suffer neurological disorders, including epilepsy, autism, and mitochondrial disease sometimes experience surprising levels of relief from cannabis or hemp oil.
Improvements gained from the administration of such plant-based oils include relief from symptoms like seizure activity, loss of motor control, and one of the most common results of any disease, pain. Some caregivers have reported cognitive and motor coordination improvements in sick children who are given cannabis oil, including the onset of speech, basic problem solving skills, and even milestones such as the ability to feed themselves or walk.
The analgesic properties of the various cannabinoids and terpenes produced by cannabis are of obvious appeal to patients and their caregivers due to the commonality of pain in such a wide variety of disease and condition profiles.
One family knows the benefits of cannabinoids so well, they are fighting for legalization in the United States. Jagger Cotte is a nine-year-old boy living in Georgia who suffers from mitochondrial disease (also called mitochondrial disorder), a rare congenital condition that, according to the United Mitochondrial Disease Foundation (UMDF), results from “failures of the mitochondria, specialized compartments present in every cell of the body (except red blood cells).” 1
According to the Cleveland Clinic, one in every 5,000 people suffer from a mitochondrial disease. “Each year, about 1,000 to 4,000 children in the United States are born with a mitochondrial disease,” states the organization. 2 Due to the sheer number and type of symptoms involved in this disease, including the specific organs involved, it is often mistaken for other ailments.
The criticality of mitochondria in the maintenance of human health and wellness cannot be over emphasized. Responsible for “Creating more than 90 percent of the energy needed by the body to sustain life and support organ function,” genetic disturbances to the functionality of this cellular mechanism typically result in a significant impact to human health.
Disturbances to mitochondrial functionality can result in severe impacts to cellular function and energy levels. In severe cases of mitochondrial disease, pa tients suffer cellular breakdown that results in organ failure.
Jagger’s cognitive and motor skill developmental level is roughly that of a six-month-old infant. He is relegated to a feeding tube, having never been capable of feeding himself. At the age of one, doctors predicted that he would not survive until his fourth birthday. He was declared terminal and placed on hospice.
His parents refused to give up their efforts to help their child. Their options within the mainstream medical community having been exhausted, the 30-something couple began pursuing alternative treatments and therapies.
Children with neurological disorders such as Jagger’s suffer from a wide range of symptoms, including severe pain (resulting from muscle cramps and other complications, including paralysis), respiratory failure, and reduced mental capacity. The combination of these conditions paints a bleak picture for parents and their loved ones. Few children suffering mitochondrial disease live beyond the age of four.
During an exclusive interview with GRAM, Jagger’s father, Sebastien Cotte, told us, “Before cannabis, Jagger had episodes of cramping where his pain level was so great that he would scream. He’s nonverbal, so he screams when he’s in pain.”
Sebastien explained how these episodes would occur, on average, four to five times a week, with each featuring a duration of between five minutes and one hour. During the episodes, Jagger suffers extreme cramping and high levels of pain. “His legs were so tight and hard, we couldn’t even bend them,” said Sebastien.
He explained how, after beginning to treat Jagger with cannabis, including THC, he and his wife were able to reduce the occurrence of his episodes to only one or two per week. In addition, treatment with cannabis oil resulted in shorter episodes lasting “only a few minutes.”
When asked how cannabis has helped, Sebastien responded that he believes it has saved his son’s life. “Jagger is alive today because of medical cannabis. We had to move to Colorado to do it, but we got him started on cannabis right before his fourth birthday.”
Sebastien explained how Jagger remains on hospice and is very frail, but “Cannabis has given him a much better quality of life, which in turn is giving him a longer life.” When queried about the specific benefits gained from Jagger’s consumption of cannabis oil, Sebastien cited significant pain and seizure reductions. For seizure activity specifically, occurrence has decreased from about a dozen per day to only two to four. “He’s just a happier, more aware kid overall.”
In a heartwarming testimonial endorsement of the efficacy that cannabis has afforded Jagger, Sebastien explained how, for a brief period, Jagger achieved the motor and mental coordination necessary to achieve the simple act of smiling. Unfortunately, the progression of Jagger’s disease now prevents the coordinated muscular expression of which most parents are the daily recipients.
The genesis for the Cotte family’s investigation of the potential benefits of cannabis oil for Jagger was the 2013 CNN documentary Weed hosted by Dr. Sanjay Gupta. The famous investigative news segment, which brought the issue of cannabis efficacy for human diseases center stage, featured a young child suffering debilitating epilepsy and the significant relief gained from the use of a hemp oil containing CBD.
The Gupta documentary motivated Sebastien to travel to Denver to learn more about how Jagger might gain life-saving benefits from cannabis or hemp oil. While in Denver, he spoke with “anyone who would listen,” including cannabis cultivators, dispensary owners, researchers, and other caregivers. Sebastien and his wife were in the desperate position of having exercised all conventional treatments in Georgia. “We were clearly out of options,” he said. “Everything we could do... anything possible... we had done.”
“We were medical refugees, forced to relocate from Atlanta to Denver to obtain legal cannabis oil for our son, Jagger. Our use of cannabis oil resulted in an extension to Jagger’s life, well beyond the predictions of medical professionals,” he continued.
Unfortunately, the high altitudes of Denver were detrimental to Jagger’s respiratory system. Only 13 months after fleeing to the mountainous Centennial State, the Cotte family was forced to return to Georgia. Not merely disruptive and expensive, the relocation more significantly forced the Cotte family to become criminals, purchasing hemp and cannabis oil on the underground market in an effort to decrease their child’s suffering and extend his life.
In 2013, Sebastien and his wife co-founded Georgia's Hope, a group comprised of parents fighting for access to safe, legal medical cannabis for their children. The group has an impressive record of helping pass a number of medical cannabis laws in the state of Georgia, some of which achieved national precedents.
“We are the main group responsible for passing the medical cannabis bills in Georgia during the past five years,” said Sebastien during his interview with GRAM. He explained how the group lobbied the state for improvements in how it regulates its medicinal cannabis program. Georgia’s Hope helped write HB 324, the bill that legalized the cultivation and distribution of medical cannabis in Georgia. “The law is officially called the Georgia’s Hope Act. We are very proud of that.”
The couple’s success in improving Georgia’s medical cannabis program has resulted in additional qualifying conditions for participation in the state’s relatively limited system. “We were able to get mitochondrial disease added to the list of qualifying conditions in Georgia in 2015,” said Sebastien, explaining that their effort resulted in the southern state becoming “the first in the country to add mitochondrial disease” to its list of conditions that permit patients to legally possess and consume cannabis medicine.
In addition to their role in Georgia’s Hope, the Cotte family has joined others in the lawsuit against the U.S. federal government on the grounds that cannabis prohibition is unconstitutional. The outcome of this legal effort, which is slowly progressing through the legal system, could have major implications for the parents of children like Jagger nationwide.
Given a terminal diagnosis and put on hospice at the age of only one, Jagger Cotte celebrated his ninth birthday in September 2019. His parents attribute the simple fact that he is alive to his consumption of cannabis oil.
New research, including human trials, will inevitably reveal more about the complex biochemistry behind the interaction of cannabinoids such as CBD and THC with the human endocannabinoid system. As long as children sometimes gain such marked relief— including reductions in pain and seizure activity and improvements in mobility and cognitive function— parents like the Cottes will continue to do whatever is necessary to legally obtain and consume these health-giving molecules.
