Cannabis is the only medicine that helps with his daughter's rare disease. Meet the man leading the charge to change the laws in Washington.
Posted on April 16 2018
In 2014, at the age of four, River Barclay had her first seizure. Six weeks later, she had her second. Within just a few short months, River was having grand mal seizures every week, some of which would last up to four minutes-and between sixty and eighty Myoclonic seizures (also known as drop seizures) every day.
After several trips to the emergency room, River (affectionately known as “Ducky,”) was eventually diagnosed with a generalized epileptic disorder, and her long journey into the pharmaceutical industry began. She began a series of five different medications, most of which made her seizures worse. Finally, after being removed from an FDA synthesized CBD trial at Mary Bridge Children's Hospital in Tacoma WA, River’s parents decided that the natural form of CBD found in cannabis would be the next step in River’s path to recovery.
The first time River tried a CBD tincture, her transformation was incredible. She was able to spend the whole day in school and had fewer than five Myoclonic seizures - a massive improvement from the sixty to eighty daily seizures she was used to. River’s father John took to calling the CBD oil “Liquid gold.” They had finally found a medication that works, but John soon found out that not all CBD oil is created equal.
Though John’s experimentation, he discovered that River would respond differently to different strains of CBD, and oftentimes finding a reliable source of quality CBD oil was difficult. John soon realized that if he wanted to ensure he had a constant source of effective CBD medication for River, he was going to have to learn to grow cannabis and create his own oil. With the help of some friends, John set up a CBD nursery in his garage, which they named “Ducky’s Grow Show.”
Not long after setting up their nursery, John reached out to us at Kind. John had started researching grow lights, and as someone with a strong background in engineering and technology, he was immediately attracted to Kind’s LED grow lights. He called us and explained his situation with River, and we promptly sent him a few lights to help him with his nursery. We were blown away by John and River’s strength, and wanted to do anything we could to help them succeed. With the help of his new Kind LEDs, John has been able to continually grow high quality CBD strains which has helped to drastically improve River’s quality of life.
Unfortunately in the past few months, River’s diagnosis has changed. As it turns out, River’s seizures were only the first symptoms of a much larger problem. River has CLN2, which is in the Batten disease group-a group of pediatric brain disorders which affect the nervous system and typically cause problems with vision, movement, and cognition. It is incredibly rare; only an estimated 20 children per year are born with the disorder in the United States, and it affects approximately 350 American children. Sadly, CLN2 is a terminal disorder, and most children diagnosed with the disease do not live past the age of 10.
This is obviously devastating news, but despite all of this, John and River have remained strong. For the past year, John has been hard at work on Ducky’s Bill (Washington State House Bill 1060). The bill would require school districts in Washington state to allow students who meet the nine criteria required to be a medical marijuana user to consume medical cannabis on school grounds, provided it is not smoked or otherwise inhaled. While River has been able to attend school, John has had to pull her out of classes at noon every day because he is legally unable to bring her medication on school grounds. Thus, River has only been able to attend classes for three hours a day, and has not been able to take full advantage of her education or socialize with other children her age. And River isn’t alone, there are more than 50 other children in Washington state alone who would benefit from this bill.
As the law currently stands, parents of children who legally consume medical cannabis cannot bring medication to their children, even under the supervision of a school nurse-and even in states where medical marijuana is already legal. Since cannabis is still illegal on a federal level, and schools receive federal funding, it is a tremendously complicated battle that John is trying to wage for Ducky and the other children who have similar conditions. Ducky’s Bill has bipartisan support in Washington state, and has been sponsored by Brian Blake (D-Aberdeen) and Jim Walsh (R-Abderdeen). The bill is currently working its way through the Washington state Senate.
The future is unclear for John and River, but there is one thing that is certain-neither of them are going to stop fighting. We at Kind are humbled to be even a small part of River and John’s story, and their strength astounds and inspires us every day.