This month a sweet four year old boy named Orion had to relocate from Texas to Colorado with his mother Tahj Mayes in order to obtain access to much needed medicinal marijuana for his severe seizures.
His father, Glen Mayes, is a SAG E actor who had to stay behind in Texas to finish work commitments. Soon Glen will join the family in Colorado where the loving trio can be reunited.
The family has been temporarily torn apart by the brutal and archaic War on Drugs, a sacrifice they are willing to make to help their son find true healing. Here is their story, in their words:
Orion’s Journey to Colorado
Orion and I (Tahj) are currently stationed in Colorado Springs, CO for the opportunity to use medical marijuana to treat and prevent seizures. Glen drove us up here, helped us get settled and get a LOT done for a week and then he flew back to Austin to fulfill a job commitment and to pack up our belongings. It looks like we are making this temporary trial a more permanent move. We are staying in the basement of a generous and supportive family of friends of ours. And they have quickly become friends, as well!
And in other family news, we are expecting a baby sometime in early 2017! <3
(Garden of the Gods–It’s so high!)
Why We Left
We left Texas because we were frustrated that the only treatment for Orion’s seizures that was offered to us was using dangerous pharmaceutical drugs, benzodiazepines. Glen was familiar with them from his years in juvenile corrections. I researched these drugs because I knew nothing about them. I was surprised to discover that the exact mechanism for how benzos work is unknown, especially considering the speed and ease with which they were prescribed to us. We were given very little information on side effects and withdrawal, but encouraged to go ahead and use them as daily preventatives even though Orion doesn’t have seizures daily.
We also researched cannabis and found that it has been effective in treating and preventing seizures and that the potential side effects are minimal. To suffer through the trauma of repeated seizures is hard enough. To suffer through the side effects of a highly addictive medicine that may be harming your child with each dose is horrible. Not being able to try cannabis–a natural, non-addictive medicine–is infuriating. After discovering that leg spasms Orion would have after taking one of the benzos was likely a symptom of withdrawal, we knew we had to go to where other options are available.
We traveled in 2 days from Austin to Colorado Springs. The community of medical refugees here have helped tremendously with recommendations for getting Orion’s medical card and doctors to see and resources for special needs kids. We were able to get his temporary medical marijuana card the first week we were here, thanks to Glen’s hustle! Orion’s allergies were so rough in Austin this year that we spent the last 5 months indoors. We hope Colorado air will allow us to spend time outdoors like we need and want!
(Walking around Manitou Springs)
Walking on Sunshine
Two days after being in Colorado, Orion cried because I wouldn’t let him watch TV while eating. We spent the last five months stuck indoors because of allergies. So much TV. So little sunshine. Now, five days in Colorado and after an afternoon of nature, he cried when we came inside because he wanted to stay outside. Here’s to new life!
Using medical marijuana is at this point a trial and error to find what kind works best and the dosage, so we begin our journey with a highly recommended, quality tincture. The overall health benefits that cannabis has shown is a huge factor as well. To be able to use medicine with nutritive value that also may prevent or stop seizures is preferred over the highly addictive benzos that until now were our only option.
We are interested in Orion’s daily quality of life, and with every dose of benzodiazepine, his daily life suffers. After that medicine, it is a struggle to get him to drink, to eat, to even smile–and if you know Orion at all, you know that he is generous with his smiles! So, if cannabis can halt the seizures and still allow him to live his life, to thrive in daily life, then that is a humongous win for him and for us.
We have been in Colorado 8 days now and we began his medicine last night. Sunday night he had a cluster of 3 seizures in an hour. I had to administer benzos–hopefully for the last time in his life. I hope this with all of my being.
Thanks to our new friend from a local dispensary, I was able to give Orion medical marijuana last night, and although he is still having some sort of problem that would normally have me on the watch for seizures, he slept well and seizure-free! I know that it is one night, but I am celebrating it because it is one less benzo dose for our Warrior!
We have received so much love and support so far that we are incredibly grateful to our community. It is hard for us to be a part right now, but we believe we are where we need to be.
With love & hope,
Tahj & the Mayes
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The above story was written on the 14th of this month. It has been nearly a week without seizures. His dad, Glen, reports that Orion is sleeping through the entire night and taking long healthy naps. He is happy and thriving. We will follow his story as it progresses.