Update: The Cannabinoid Trial happened on August 18, 2021. We await the Court’s Rulings.
A Palliative Parent's Last Stand in Colorado
Greetings, I am Sean Octavius Murphy, the founder of Kompassion.
I am a palliative care parent fighting for my son Atlas to have access to hemp CBD oil in Colorado. It is hard to think this situation is playing out in Colorado where it all began for CBD and hundreds of ‘cannabis refugees’ beginning with Charlotte Figi.
I am sure you are thinking… that sounds absurd, it is legal and you can now buy CBD products anywhere in Colorado. Don’t all children have access to hemp-derived CBD products and medical cannabis with qualifying conditions? If they don’t, how can this be happening where a child is denied access in 2021 in Colorado?
Sadly, it is very much happening. And therein lies the story and why I’m writing this to help my son.
But first, here is a bit about me and who I am as a palliative care parent.
I am a Twilight Brigade hospice volunteer and Congressional advocate. Since 2010, I have 1,400 hours of serving, advocating for, helping, and caring for veterans at their beside. I am a knight in the Order of Malta. I have been deeply involved in palliative care and supporting those who need a compassionate presence at their beside for more than a decade. I founded and sold Hemp Business Journal. I have a deep understanding and experience in the hemp industry and been a longtime advocate for medical cannabis in palliative care. I never knew my palliative care advocacy and experience would become so personal. It did when I became a Dad in 2018; when my son Atlas was born.
Atlas is almost three years old now and was diagnosed with Infantile Alexander’s Disease right before COVID-19 hit. We never knew his name would become so fitting—holding the world on his shoulders. Infantile Alexander’s Disease is a terminal illness with a short life expectancy. It is a neurological and neurodegenerative disease (think ALS for children). It has been very challenging and there looks to be many more challenges ahead. Quality of life is what matters. The disease progression is seizures. That’s where cannabinoids come into play.
The U.S. Government (Health and Human Services) sayd that cannabinoids are neuroprotectants and antioxidants and can help Atlas enjoy a better quality of life. I’ve advocated for cannabinoids to help Atlas starting a week after emergency brain surgery at Children’s Hospital Colorado when he was three months old (December 2018).
Following brain surgery, CBD became one of the two big issues that came between Atlas’s Mom and me. I advocated we investigate Atlas having 1mL of hemp-derived CBD oil given post surgical neural-inflammation. The doctors at Children’s Hospital said, “we have policies against CBD” and “more research is needed.” There was no dialogue or consideration of medical facts and data involving cannabinoids.
Children’s Hospital will not recommend or prescribe CBD (unless as Epidiolex, an FDA approved drug) except for three rare pediatric seizure disorders. This is for several reasons, but the primary ones are the FDA will not regulate CBD as a dietary supplement and “marijuana” is still on Schedule I of the Control Substances Act. Children’s Hospital receives federal funding and therefore it is a conflict of interest for them to be involved recommending hemp or medical cannabis. The hypocrisy of medical cannabis being Schedule I is astounding and is the driving issue behind Children’s “policies” that are ultimately denying cannabinoid access to my child.
This has been going on for nearly three years now; all but the first five weeks of Atlas’s life. That’s when things fell into “divorce court” after a 10 month marriage, our son’s brain surgery, and these medical decision making issues coming between Atlas’s Mom and me. I spent several hundred thousand dollars on lawyers in divorce court fighting for my rights and for Atlas which amounted to nothing but financial loss and the lawyers profiting off two parents going through incredible challenges. I put everything I had into advocating for and having time with my son.
After a year and half, losing every major issue, and running out of money, I couldn’t go on with my lawyer and began representing myself. The big issue in the divorce was “medical decision making.” I’ve advocated and held firm for years now that two parents share decisions with their child. Atlas’s Mom holds her position that she continue to be our child’s sole medical decision maker and that he not have access to cannabinoids.
Without a recommendation or referral from Children’s—and Atlas’s Mom’s continued position against using CBD, Atlas does not have access to hemp-derived CBD or medical cannabis… in Colorado.
Atlas is now having challenges with his GI system. We know cannabinoids are anti-inflammatory and help create homeostasis by regulating the Endocannabinoid System. Atlas’s MRIs are already showing neurodegeneration in his brain. Children’s physicians have said Keppra and Depakote will be the anti-seizure medications prescribed for seizures (which are the near certain progression of Alexander’s Disease). Keppra and Depakote side effects can be very severe. Children’s has suggested “Anal Botox” be used and other invasive testing procedures be done to investigate his GI distress (severe constipation and diarrhea). I have advocated with all my heart and mind for hemp-derived CBD to be used first, and that we focus on medical cannabis research that can help Atlas and children like him.
Now, I’m at the point I’m just in total awe of it all. How my child lives in Colorado and does not have access to hemp-derived CBD and the Schedule I status that prevents research from happening.
I have represented myself in Court since May 2020 defending my rights as a parent and my child’s safety and quality of life. I have fought with every bit of my strength I have to be in his life and be a part of his medical decisions. I am still standing—still going as my child’s greatest defender and advocate. This is my last stand in Colorado. I am his Dad and will not give up.
I will continue searching for whatever is safe that can help Atlas and his quality of life. I will continue advocating that our country be able to do robust medical cannabis research (which can only happen if marijuana is removed from Schedule I).
The trial to decide whether Atlas will have access to CBD (or not) and whether two parents will share medical decisions for their terminally-ill child (or not) occurred on August 18, 2021.
I am a palliative care parent and I’ll be there to represent myself and my child’s best interests on August 18. I will hold the ground it is best two parents share medical decisions for their child, especially in this instance with Atlas and his brain disease. I will hold the ground that our child have access now to cannabinoids (as a hemp dietary supplement) for palliative care and quality of life. I will hold that ground that the word marijuana and the Controlled Substances Act are inherently racist and that cannabis be removed from Schedule I.
I do not wish this experience or path on any parent or child, but I do wish whoever is reading this — that’s you, my dear reader — a simple message of strength, hope, and courage.
When life gets challenging and you are pushed to your very edge, just remember, don’t give up—not on yourself or your loved ones. Do. Not. Ever. Give. Up.
March to a tune of endurance and fortitude. Stay strong. Hold the weight of the world on your shoulders if you must. Keep your heart open and remember truth, justice, and love will prevail.
Thank you for reading and caring.
Sean Octavius Murphy
aka Atlas’s Dad
Where to go and what to do to help:
We can really use anything you can provide. Charitable gifts will go to help Atlas and pay legal expenses in connection with the trial. We are raising $8,000 to finance the advocacy and litigation expenses for the CBD trial.
Additional and larger contributions after $8,000 are raised will go to Kompassion’s legislative advocacy campaign to regulate CBD as a dietary supplement, remove cannabis from Schedule I, and fund medical cannabis research projects.