Across the country, countless individuals are using cannabis to find relief for various health concerns. Among these individuals are children — many of whom face severe, life-altering conditions — who have found cannabis to be one of the only treatments that has made a significant beneficial difference to their lives.
However, due to state legalities, cannabis’s Schedule I federal ruling, high cost and other roadblocks, it can often be difficult for parents to access the medication their children so desperately need. That’s why some parents have turned to growing their own cannabis, nurturing the plant that has been, in some cases, a real lifesaver.
Due to a severe accident that happened while in utero, Michelle’s* daughter Fae* has endured a lifetime of health and developmental challenges. Between brain damage and seizures, caring for Fae had always been a unique experience and, according to Michelle, in addition to the multiple types of seizures Fae has dealt with, she also has autonomic dysfunction, which makes it difficult for her to regulate her body temperature, heart rate, blood pressure and breathing. The medication that Fae had been forced to take to combat her seizures caused frequent mood changes, irritability, dizziness and nausea.
Fae is also a quadriplegic and requires help for all of her personal care. She’s trached and on a vent while needing a feeding tube, although she is able to occasionally eat purees.
However, two years ago, when puberty hit, Fae started experiencing 5–7 grand mal seizures a day.
“Puberty made already difficult to control seizures impossible,” explains Michelle. “[Fae] was spiraling out of control and headed down a very bad road, healthwise.”
It was then that Michelle and Fae’s doctors started to consider cannabis as a realistic alternative treatment option.
“We had discussed cannabis with [Fae’s] neurologist as a possible option years prior, but due to limited access and expense, it was not a viable option at that time,” continues Michelle.
Fortunately for the mother and daughter, they live in Oregon, where medicinal and recreational cannabis are both legal. It was there in the Beaver State that Michelle and Fae connected with The Forrest Initiative, a center dedicated to serving the needs of under-resourced families in obtaining cannabis medication for children. The initiative was launched by the founders of TJ’s Gardens — an organic cannabis grow op, with farms in Oregon and Washington — and the parents of children who require access to cannabis to treat epilepsy.
To start with, The Forrest Initiative provided Michelle with CBD oil for Fae — and the results were astounding. “We saw improvement with the first dose,” she recalls. “Within one month there was a 25 percent reduction in seizures, and by the three-month mark a 75 percent reduction.”
Now aged 14, just two years since she began using the CBD oil, and Fae has been weaned off two of her most debilitating seizure medications, with a 93 percent reduction in seizures. And, Michelle notes, there have been other benefits they were not anticipating. Fae’s gastrointestinal function has greatly improved and she saw a 33 percent increase in bone density. Plus, her respiratory status has improved immensely, which allows Fae time off her vent.
These amazing results, coupled with Michelle’s natural inclination to always plan ahead, prompted the dedicated mother to start growing her own cannabis. “I knew going back to pharmas only to control her seizures was not an option. I needed a plan B should anything happen to her supply from TJ’s,” Michelle explains.
Canna Moms Cultivate To Take Control Of Their Children’s Future
Allison Ray Benavides, a licensed clinical social worker, understands Michelle’s thought process all too well. Benavides is the founder of Pediatric Cannabis Support, a San Diego-based organization comprised of mothers who utilize cannabis to treat their children’s medical conditions. While some of these mothers source the medicine from dispensaries, others grow their own to create the tinctures and oils their children need in treating the symptoms of epilepsy, cerebral palsy, autism, Rett syndrome, Tay-Sachs disease, and more.
“The most empowering choices I have made as the mother of a child with a life-threatening disease has been learning to grow and make my son’s medicine,” Benavides says. “From seed to oil, I can heal my own child.”
For Michelle, when it came time to start growing, she was pleased to see that the learning curve was not too steep, as she had never attempted anything like this before. It helped that there were many resources available for her to access, and she learned to trust her gardening instincts in the process.
“The biggest thing I’ve learned is that growing is very intuitive,” she says. “There isn’t a stock ‘recipe’ for growing every plant. Each strain has its own likes and dislikes in regards to how often to water and feed.”
While Michelle realizes how lucky she and Fae are to be living in a state like Oregon, where it’s legal to have a small home-grow setup like they do, she also wishes there were more strains available that meshed with her daughter’s specific needs.
“Specifically, high-CBD strains,” explains Michelle. “Finding high-CBD, low-THC cannabis in any form — seed, clone, plant — is a lot harder than I would have imagined.”
Thankfully for Michelle, what she lacks in access to specific cannabis strains, she more than makes up for in support — from friends, family and cannabis professionals alike.
“Most of our family understands that what we’re doing is to ensure my daughter continues to get her life-saving medication, no matter what; that we’re not growing to get stoned,” she says. “They’ve seen the change in her and get it. As for her medical team, we are selective with who we share that information with. They all know she’s on medical marijuana of course, but I’ve been more private about the fact that we actually grow.”
The Forrest Initiative, who continues to prove a valuable support system for Michelle and Fae, was pivotal in helping them access the plant medicine Fae needed. The initiative’s executive director Tanesha Smelser says that her group’s immediate goal in helping families is to set them up with cannabis therapy. Support for growing comes next, if desired.
“Usually, parents come to us exhausted and scared, with a medically fragile child in crisis,” Smelser explains. “Our suggestion is to try cannabis therapy, but let us gift it to you. We want to carry the responsibility until your child is stable and you are able to make the choice not out of fear and panic, but as an investment in their tomorrow. We usually tell parents to wait for a year.”
Smelser estimates that after receiving oil for more than a year, about 10 percent of families that access The Forrest Initiative go on to grow cannabis at home for themselves.
“We want parents to learn to grow for themselves if they can, but many cannot,” explains Smelser. “We offer mentorship, advice and tutorials to any parent in our program that wants to take that step.”
When It Comes To Growing, Start Small And Simple
For parents interested in cultivating their own cannabis, figuring out the first steps can be overwhelming. Clint Harris, cultivation director for Eco Firma Farms, recommends looking for a reputable retailer to acquire the right strains for your child’s needs. Danny Sloat from Colorado-based all-natural grow operation AlpinStash suggests keeping things simple and small to start with.
“Invest in a low-wattage, energy-efficient light like an LED or LEC and a good pH meter,” he advises. “Check out our YouTube channel for some tips about mixing soil and sprouting seeds. Try to source your seeds or clones from a trusted and proven source to ensure that you get the legit strain.”
Perhaps the biggest issue that repeatedly crops up when discussing parents who grow cannabis for their sick children is the stigma surrounding it. But that is all the more reason to share these stories, insists Smelser.
“When we share our stories and our struggles, we humanize our choices. Every parent, no matter how anti cannabis [they are], can relate to being willing to do anything to help save their child. This common thread connects us. Connection changes perception.”
For her part, Michelle hopes that Fae’s experience and story will help others. “I feel that we have been mightily blessed, and I look for ways to pay it forward.”
*Names altered to protect privacy