HH Update: Brandy Johnson's Plea For Legalization
Remember Brandy Johnson, mother of Tres who suffers from Diprosopus? We interviewed Brandy about her and her sons struggles to find adequate treatment for the rare disease he suffers from. Being the only one who has Diprosopus in the entire world, Tres has had to experiment with many medical treatments, seeing no consistent benefits other than receiving cannabis oil.
Brandy has written an informative and passionate testimony of her experience being the mother to a son who suffers from Diprosopus and intractable epilepsy. Herbalists, activists and marijuana patients can relate to her emotional, factual plea to legalize cannabis.
A Fight for Survival & Freedom
Why I urge our nation into Prohibition reform: The Prohibition of Cannabis is a wrongful law that must be changed. How is something less dangerous and more beneficial than Tylenol on the Schedule I drug list? I, as a constituent and US citizen, wish to speak with you about your views on this topic. I would also like to explain how prohibition has directly affected my life. While I know I am just one person, I hope to see this change at a global level as I believe it to be each individual’s human right. Cannabis is a versatile plant that poses no immediate harm to any individual or persons. I wish to express my sincere plea for this plant’s reclassification, not on the basis of criminal reform but on the fact that this is our right and prohibition directly impedes this right.
Prohibition has led to a downfall of society. It's consumption of alcohol and misuse of pharmaceuticals that has become big business, not only to companies, but also to our criminal justice system. Prohibition has led to many arrests and fines, lawyer fees and incarcerations. While many recreationally ingest marijuana, there are thousands more who depend upon the medicinal properties that cannabis possesses. Cannabis is a very beneficial plant; it is a non-lethal form of pain management, a natural anti-inflammatory, and effective anticonvulsant. Despite the reports of how this treatment has helped others in situations, of exhausting all other outside treatments, it is still illegal in most states and is considered immoral by many. Cannabis is not a new form of treatment and has in fact been known for centuries to have had great healing properties. It was used for treatment widely until the turn of the century.
Education is the buffer that separates truth from stigma; the only problem is the government’s almost intent to keep prohibition into place. I do not know why! What can you possibly benefit from that is worth losing thousands of lives and having the needy suffer from lack of adequate treatment? When is enough, enough? When do we call into question the intentions of our government and who will then stand up and take responsibility for the unjust laws that were passed before our time? When will someone do the right thing? Who will it be? These are questions I constantly ask myself as a mother of a special needs child whose life depends on cannabis.
I know all too well the need for prohibition to end.
I am a United States citizen and a human being who should have the right to save my son and to do what is best for his health. Because of prohibition, however, I am not considered a caring parent but a criminal in the eyes of the law. This law is wrong and not only inhumane but unconstitutionally founded upon lies! Why then, is it still upheld by our government? What is there to prove? There is no deniability when you are educated in the truth and only wish to not further your own knowledge. How can the U.S. government have a patent on an individual cannabinoid and use a manmade version for medicine yet, when in session and in argument, use that same cannabinoid to pose their opposition? (So, it is ok for you to say it is medicine when you benefit, but when I say it… I’m wrong.)
THC, or better known as marinol, has been prescribed and used for years under a U.S. patent yet, they deny the medicinal value of cannabis. This makes absolutely no sense to me. Pride has no place in politics! Admit your faults and correct the wrongs you see done before you. It should be that simple, but unfortunately, it is not.
Our son is the only one IN THE WORLD living with Diprosopus: a condition caused by the presence of the SHH protein during gestation, causing cranial and neurological duplication. There has never been a brain like his in medical history, our son is a medical anomaly and has overcome many obstacles from birth. Tres was not expected to survive the 3 hour trip to St. Louis, and he will soon be 12 on March 4th of this year. His most challenging fight would be with Intractable Epilepsy and the almost constant seizures he would have to suffer.
Tres was having over 300 seizures every single day, up to 456 seizures in a 24 hour period some days. As the years passed, we exhausted all medical options. There was no medication that ever helped with his seizures. I kept telling the physicians and they never listened. Every time, they would max him out on the dosages, then add other medications, creating very dangerous cocktails of anticonvulsants. After every medication was exhausted and we had tried everything, there were no more options. They told us about the Vagus Neuro Stimulator (VNS): a pacemaker like device, attached at the base of the neck on the Vagus nerve, which shocks him every 20 seconds for 7 seconds duration. This did not help. By the end of that year, almost 6 months later, Tres would have also maxed out the device, and was starting to have his seizures increase from a partial decrease for three weeks. By November of 2012, they told me there was nothing more they could do for our son. Nothing. I felt completely abandoned and alone, so I started to do research myself, more than I already had.
I know that after that day something inside me changed. I knew at that moment it would be left up to me, and only me, who would advocate for my child and never give up on him as so many others had. I cannot account for all of the case studies and documents or articles I read. There were so many I lost count over the years. The most influential thing I would come across would be Charlotte Figi’s story, (which I found on Pinterest of all places) that very unexpectedly caught my attention under Epilepsy. After reading and doing my own case studies, I was ecstatic to find that a child whose seizures resembled my own sons was finding relief in something as simple as this plant. I was resuscitating Tres two to three times a week at this time, and starting to show the beginning signs of renal failure. We were watching as our son was slipping away from us. Bound by the endless pharmaceuticals and constant seizures, he was but a shell of who he is.
I had already witnessed my son’s heart stop beating and his breathing completely halt as he fell limp in my arms twice, thank God my breaths were enough to bring him back without doing compressions.
It is one thing to have a sick child, it is quite another not having one second pass without the fear of your child having a seizure and dying while you can do nothing but watch. The insomnia that comes with this fear is almost unimaginable: being exhausted yet, too terrified to fall into actual sleep for fear your child will pass through the night… This is what it feels like to have a child with Epilepsy. To have something so common, yet so misunderstood is hard to deal with in itself and to add all of Tres other complications and lack of adequate treatment has been trying, to say the least.
I was heartbroken and felt abandoned by the ones who were supposed to protect us. Where were we to turn? What do you do when there are NO answers, NO one to help, NO one to fight for you? YOU FIGHT FOR YOURSELF, THOSE YOU LOVE, AND OTHERS WHO HAVE NO ONE TO STAND FOR THEM… or you give up and retreat into silence. I will not give up! I believe there are those who would feel the same as I do and who will change their minds if they hear Tres’ story. Tres is not the most likely of heroes but he is mine. Tres, our third son, our miracle, we are used to fighting for him and his survival. I believe we are each given our struggles not only to help prepare us for our futures, but for us to be able to help others through them. I was unaware at one time that something so simple, yet so controversial would change our lives forever.
The more I researched and learned, both anatomically and biologically, fit into all the article assessments and case studies I had done. This plus an understanding of general physiology and chemistry helped me understand not only the growth and biology of the plant itself but how this could very well be applied to health issues and how the body reacts to certain cannabinoids in the plant. The potential is right there for anyone to see and it doesn’t take much to put two and two together. I was investigating myself as to how and why prohibition came about and the more I learned, the more disappointed and ashamed I became of my own government. 'This could not be true,' I thought, I hoped. But what are you left to think when all you find is how this law was unjust and unfounded at the beginning? The only difference is the overall knowledge and education of our nation today. Education is not just for the privileged anymore and now the masses are privy to information at the touch of a button or swipe of the hand. I still have faith in my nation as my faith in our establishment fades. I hold hope that someone will set right what was once done, and has the courage to fight for those who cannot fight for themselves. I always thought that was what our government was for, to fight for its citizens and their rights, to help keep us safe and protect us.
This is not just a fight for our rights, but for so many a fight for survival! We have lost many children and loved ones in the fight for what should have never been taken to begin with. Help us save others and give them the right to all available treatment without persecution and exploitation from Big Pharma and a government that would seek to build their billions upon the ones in need. So many times I have personally seen how patients seem to get punished for needing something to survive. Why should we be charged “fees” most of us cannot afford and then more “fees” for medications insurance doesn’t pay for (if you have insurance) with more paperwork to fill out while you’re trying to breathe and not fall apart as your child is turning blue and you’re on hold with the Ortho because thanks to over-medication over the years, he has just broken another bone?
This simply is not right. How can the people who need you most seem to be the last priority over the ones writing the bills to hold on to what they can and can’t make money off of? Just do the right thing!
There is an abundance of money in recreational or industrial. Do not punish those who are in need of something just because you may not be educated enough to understand it. I was once there too, I am still learning as much as I can. We cannot do this alone, and I need your help to save my son and so many others.
There are plenty of uses for industrial hemp and cannabis. Our planet and its people need this plant to sustain our lifestyles and only education can teach you this. Not only our nation faces this dilemma, there are many lives at stake here and not just those who may live domestically, but abroad as well.
Many have used our case in fighting for medicinal cannabis testimonies around the world from Australia to the UK. This is a problem people face all over the world. So many parents fight to save their children and so many people fight to save themselves, while others with no understanding think there may always be other options when in fact, that is not always the case. Many are in the same situation as we are, having exhausted all treatment options available in the world.
Cannabis is and was the only other alternative and absolute last option for relief of Tres' thousands of seizures a week, hundreds every day for years. After trying cannabis oil the first day, Tres went from around 325 seizures on a mild day to under 60 the first day!! IT WORKS! Nothing ever worked before; I was and still am skeptical about how well we can manage Tres' seizures, but to know that it works is a huge indication that this is what I have been searching for. This is medicine. This is safer and more effective than anything else.
Tres has been taking high CBD oil since March of 2015 and after the first few days, has not had over 45 seizures in a day. He still has hard convulsive seizures, but not nearly as many as before. Upon the addition of a small amount of THC while in Colorado, his cluster seizures had completely diminished until last month, when they first started to return although he still has fewer than 40 a day. He will have multiple seizures every day, but 40 is a lot better than 400! Unfortunately treatment is still technically illegal in our home state of Missouri; therefore Tres has not had the medications he needs to help control his seizures. He does well on the CBD alone but also needs the THC to combat the different receptors and help ease his cluster seizures.
We tried to relocate to Colorado but could not afford to stay after going over 1,000 miles and not having suitable accessibility and basically getting taken for all of our 6,000.00 we raised to relocate my son, father and I for his treatment and follow up.
I met many parents and families that have moved and ended up homeless or swindled out of their saving in promises of a place to safely and legally treat their ailments. Many of these families are split up as mine was and they are forced to live apart because of the financial burdens. This is incredibly disheartening, as most of these families have to endure so much already. As I feared, we could move and what if something happened and we could not get back home. Or worse, what if I were left to deal with death by myself, with no one able to come or vice versa? So many things clouded my mind on that long trip to and from Colorado, and what I took from that experience is that NO ONE should ever have to uproot their family for treatment. It is not what my grandfather fought for. He was a bronze star recipient, and he, too could have benefited from cannabis treatment. He passed from lung cancer that the VA misdiagnosed for two years as pneumonia. This law is not justified. We were broken and withered by the time we had gotten back to Missouri; the mental and physical toll it took on us was evident. There is no telling how many families have been in that situation throughout time all in search for a cure.
I hope that my words hold dear to your heart or at least scratch the surface of your skin. If at most you do not agree, at least heed my words and listen to what I have said. I know a lot of people who thought differently just two years ago. I urge you to please look into yourself and ask what you would do to save your child or yourself for that matter. How is it perfectly legal for people to kill their babies and illegal to save mine? Just a thought, people, don’t have a panic attack (they are not fun). Perspective is a very fickle thing and can be swayed, if able to change another’s point of view, which is the hard part. How can I get you to look at this from our perspective? How many must die before there is change? What can we possibly do to get someone to help us? Who represents us?
Without Federal change, nothing will change. Physicians do not want to speak about it. People are afraid to ask questions about it. It is even illegal to do research on it! It’s JUST cannabis!!
This is a pivotal point in not only health, but environmental science. I urge you to make the right choice to end federal prohibition. It is not justifiable or sustainable for anyone.
Tres is the only person in the entire world living with Diprosopus out of only 36 cases known to mankind in the history of medicine. Tres was not expected to survive the night and we are so blessed to say, thanks to God, he will soon be 12. Tres suffers from intractable epilepsy and had started having noticeable seizures at around 3 months of age. We had exhausted ALL treatment options both medicinal and surgical by November 2012 and cannabis is the last and only option we have left. We advocated and helped testify getting the CBD bill passed in our state only to find out that even now, almost 2 years since the bill has passed, there are no medications available and no cultivation planned to start due to too small a patient market. This is totally unacceptable.
I am a criminal in my own state because I still give Tres CBD oil we got from Colorado. It isn’t even cannabis; it is technically hemp without the THC, but because of the state passing the bill with the intent that medications can only be grown, manufactured, and processed in Missouri to keep money in state and blah blah, it may be good business, but it is NOT right. Almost two years and no one seems to care about the seconds it takes to die, or the ones who have died in the year and half still waiting.
I will continue to give Tres his oil because it is the only thing that has ever helped his seizures and did not hurt him. It would be medically negligent for me to not give my son the only thing that has ever worked, and that makes me a criminal by definition in my own country.
How is this freedom?