The testimonies below were written by Missourians to members of the General Assembly urging the legislators to support medical cannabis in our state. Some of these folks have had to relocate in order to get the medication they or their children desperately need.
Missouri Cannabis Refugee
My daughter, Grace, was diagnosed with a catastrophic form of epilepsy, Infantile Spasms, at five months old. The spasms have evolved over time and now appear as quick tonic or electrodecremental seizures, as many as 200 to 300 per day before moving.
Grace’s seizure disorder and the 13 failed prescription medications we have given her throughout the years have profoundly affected her development, growth and immune system. She is now five years old and is the size of a two year-old.
Since starting Charlotte’s Web, she is like a different child. We have seen a huge reduction in the number of seizures, amazing eye contact, new sounds, and she started sleeping through the night for the first time — ever. She is so much more interactive and playful. She is also starting to take steps by herself in the gait trainer and drink from a straw.
My husband, my stepdaughter Grace, and I relocated from Saint Louis to Denver in October. We had to leave my 18 year-old stepson there because he had just enrolled in school. My whole family and support system is in Saint Louis, so it hasn’t been easy in Colorado, where we had no one. My husband was able to move with his job, thank goodness.
We had built our dream home in Saint Louis when Grace was born. We had to rent that home out and find a home to rent in Denver. As much as we like Denver, it is still unbelievable to me that anyone has to pick up their entire life and move to another state just to get a lifesaving medical treatment for their child. I hope that changes sooner rather than later. I will do anything I can to help.
Missouri Cannabis Refugee
My name is Abby Rowe. I’m a proud Missourian, and medical cannabis saved my life.
Growing up in St. Louis, I was diagnosed with Ehlers Danlos Syndrome at age eleven. EDS is a degenerative and debilitating connective tissue disease. It means that my skeleton is held together by my muscles because my tendons and ligaments don’t function properly, leading to severe pain, heart problems, frequent joint dislocations, and a risk of going blind.
As Ehlers Danlos Syndrome effects the body in its entirety, it is a difficult disease to treat outside of pain management and physical therapy. The medications they use to manage the pain not only destroyed my kidneys and liver, but they made me nauseated to the point that I couldn’t eat. The pain also made it difficult to eat or do anything else, for that matter. I was caught in a Catch 22.
It was as my body literally shut down that I found cannabis. In a sentence, cannabis lets me participate in my own life again! After only four months of replacing prescription drugs with this natural treatment, I showed no signs of ever being near renal failure. My weight stabilized, and I started to regrow the muscle I’d lost from being so sick. Now I am feeling better than ever! I get to enjoy meals and eat when other people eat. I have pain managment that I’ve never had, and feel like I spent the past 14 years walking around in a haze, one that I don’t have when I use medical cannabis. It is amazing that something as simple as a flower could change my everyday life so completely.
I was forced to leave Missouri for Colorado — because my life depends on it. But I love Missouri! I was raised in Saint Louis, lived in beautiful Columbia for 7 years while attending the University of Missouri, and I love everything our state has to offer. Being forced to leave my home, my family, my friends, and all the beautiful places and resources that Missouri has to offer broke my heart and there isn’t a day that goes by that I don’t wish I could move home.
Please don’t force me and others like me to live as refugees. Support medical cannabis in Missouri.
Daryl & Patricia Bertrand
In 2004, Daryl was seen for recurring hip pain, and was treated with narcotic painkillers. In 2005, while hospitalized for liver failure, he was diagnosed with three spinal conditions: stenosis, degenerative disc disease, and spondylolysis. A little over a year later his liver failed again, and we were told that the pain pills were the most likely cause.
If Daryl continued to use those drugs, he likely would have died. Instead, Daryl went to California and obtained cannabis seeds and started an indoor garden to treat his chronic pain issues, while continuing to work and provide for his family.
In 2009, a fall did more damage to his already fragile back, requiring surgery. The surgery was delayed until April of 2010 due to the concerns of his doctor and his previous issues with liver failure. Finally given clearance for the surgery, he underwent his first spinal fusion in April of 2010. That surgery failed, and was repeated in May of 2010.
Five days after returning home from his second spinal fusion in two months our lives changed radically. Our home was raided by COMET Task Force looking for his cannabis garden. We went from living a modern middle-class life to second-class citizens. We moved from a nice suburban home to a neighborhood where we can’t allow our kids to play outside.
Patricia, who didn’t use cannabis, was forced into substance abuse counseling and four years later cannot find permanent work, despite holding a college degree.
We should not be labeled as felons for seeking out the medicine that allowed Daryl to lead a healthy, productive life.
Mother in Bernie, MO
My name is Brandy Johnson, and my youngest son Tres has uncontrolled epilepsy. His life depends upon safe, legal access to medical cannabis.
Tres is one of only 35 individuals in medical history to be born with a rare craniofacial abnormality known as Diprosopus (also known as cranial duplication). Most children with this abnormality do not survive gestation, and those who do rarely live past two years-of-age.
Tres’ prognosis was deemed fatal, and he was not expected to live through the first night. I am very happy to say that, despite all odds, Tres turned 10 on March 4th of this year.
Tres started having noticeable seizures when he was around three to four months old and has been taking medication for the past 10 years as they have gotten progressively worse. Tres has developed roughly five types of seizures, and they cluster frequently. In the last three years, his seizures have become more aggressive and life-threatening, and he was having well over 300 seizures a day.
I resuscitated him on average five times a week but up to three times a day on some occasions. My son has been on every medication without relief for more than weeks at a time and with numerous side effects. He has been on the strongest and newest medications recently because nothing has worked.
Our last option for treating his seizures was a VNS surgery. This is an implanted device much like a pacemaker. It is attached to his main nerve and shocks him every 20 seconds for seven seconds. Tres had the surgery in the summer of 2013 and by November was at full strength.
There is not anything else they can do for his seizures, as we have exhausted all other options. My son has died twice in my arms, and every day I watch him struggle to breathe.
Medical cannabis is our last hope for treatment. It is also a much safer alternative to every other seizure medication my son has taken, as they all could result in death. Tres has to have his levels tested frequently, so that he doesn’t go into renal failure.
Please help me save my son and help so many others. I don’t think that it is right to have to move out of state in search for life saving treatment. This is our home. I feel we should have the right to all available medical treatment no matter where we happen to reside.
I cannot afford to move and my son’s life depends on finding relief for his Epilepsy. This is our last hope and has proven to help children like my son.
How many more have to die?
Missouri Cannabis Refugee
Sydni is a beautiful ten year-old girl. She happened to celebrate her tenth birthday on cannabis — the best birthday she’s had in years! Up until four years old, Sydni was, as far as we knew, very healthy. Shortly after turning four she began to lose her personality, her energy, her responsiveness. It was like one day someone came and flipped a switch in Sydni’s brain. She went from running and skipping and telling silly stories to staring into space on a regular basis and needing me to do everything for her, from feeding, to bathroom, to clothing.
Sydni is ten. She cannot write her name; she cannot read a book; and she misses trips to the zoo and birthday parties. Why? Because of seizures. 24/7 seizures. She was labeled Doose Syndrome, which presents as continual seizures of all sorts. From going blank to convulsing, I have seen my daughter’s body do things no parent should ever see. Her EEG showed her having 125 seizures an hour. She was having roughly 3,000 seizures a day. Eventually I used my entire savings to pick up our life in Missouri and move to Colorado.
Through a period of five years before the move, every treatment failed Sydni and left its own mark. She has been on about nine pharmaceuticals, had a VNS implant (pacemaker-type device) put into her chest, and she has been on the Ketogenic diet (a medically induced, very strict diet in which every single gram of food is weighed, no exception). These treatments failed Sydni. She has continued to not only seize, but suffer some extreme pharmaceutical side effects.
But in Colorado, she is now off almost 60 percent of her pharmaceuticals and doing better than she has since turned four. She thinks on her own, learns more, talks more, walks better, is gaining weight, gaining strength. She has 60 to 70 percent fewer seizures and, best of all, is more happy and comfortable in her own body. She is getting her childhood back — all thanks to cannabis.
Not everyone can move here, and not everyone should have to. It’s not up to Colorado to fix the health issues in other states. Other states need to take responsibility for the health choices they make for their residents. Missouri failed Sydni.
Esteemed Missouri Legislators,
My name is James Eddings, and I currently live in Piedmont. After learning that it will be another year or two before a possible cannabis legalization law passes in this state, I have decided to move to New Mexico, where I can possess cannabis for my own personal use.
I have cancer. The kind that will never go away: Chronic Lymphocytic Leukemia (CLL). I have also suffered a severe spinal injury, numerous surgeries, and debilitating arthritis and fybromialgia. I have taken every kind of pain pill they make, with all of the horrible side effects that come with them. I also lost a son to a drunk driver and am cursed with terrible nightmares about that.
All of these issues for me are treatable with medical cannabis, with none of the side effects that the other pharmaceuticals produce. In Washington state, where I lived previously, cannabis oil treatment reduced my CLL levels to nil.
I served my country for 5 years in the Security Service of the USAF as a crypto analyst and spent years as a bonded trucker for Allied Van Lines before my on-the-job spinal injury forced me onto disability. I strongly urge you to come down on the side of compassion and caring and pass a medical cannabis bill that protects patients’ rights to affordable, accessible cannabis as an alternative treatment.
Thank you for your time and consideration.
Poplar Bluff, MO
On July 14, 2011, I was diagnosed with Acute Myeloid Leukemia. The next day, I was admitted to Siteman Cancer Center at Barnes Jewish Hospital in Saint Louis to begin what would be a five week stay for the induction chemotherapy. The diagnosis came about a month before my 21st birthday. I was released from the hospital the day before I turned 21. Between then and October 17, 2011, I was in and out of the hospital several times for additional chemo, and also for chemo related illnesses.
On October 17, I was admitted for another week of intensive “ablation” chemotherapy prior to a stem cell transplant. That week of chemo was the worst week of my life. I had horrible reactions to some of the nausea medicine, and the ones I could take, I was completely maxed out on the dosage, so there was absolutely nothing else they could do for me.
On October 25, 2011, at approximately 11 p.m., I received my stem cell transplant from an unrelated donor through the Bone Marrow Registry. All I knew was that it was from a 23 year-old female somewhere in Europe. The hospital stay after my transplant was another four weeks.
Finally, in January 2012, I started another round of outpatient chemo which I had to stay in St. Louis for and take daily for five days, every six weeks for eight cycles. I would lose up to ten pounds in the first week or two after each round of chemo. To deal with the nausea this time, I turned to medical cannabis, and it allowed me to eat and keep food down far better than the medications I was given in the hospital.
The chemo was finally complete, and I was considered in full remission on December 6, 2012.