Our Loss and Our Passion
This is the start of a story about the Priest family, the owners, and founders of Marijuana Writers. I’d like to tell you about cannabis, Menkes Disease, seizures and why we know marijuana legalization must happen. My name is James, and I’m married to Ashley. We have six children, 2 of which reside in heaven. Our family is a tight one. We’re all very close. Here’s the story of one of our losses and the drive to our passion.
We hope to bring awareness to the public about the truths pertaining to cannabis. Over the next few months, we plan to become more openly outspoken about our lives. We’ve found so much inspiration out of times when darkness was all that seemed to surround us.
I’m not quite sure how to start this so here goes nothing, this is the start of my story. Call it a random thought that cannot be silenced. One so loud that it must be penned so as to be heard throughout time. My heart feels for every child that suffers. For every parent that pleads upon deaf ears for change. You may not have to listen, but you will hear this. Cannabis reform will and must happen.
People have the right to have safe, affordable access to medical marijuana. They have the right to grow this medicine themselves. The right to tinctures, topicals, and oils. You sirs and mams do not, however, have the right to force people to take your supported drugs. You have no right to jail people for plants. Your day will come, and you best be able to live with yourself on judgment day. I know I can.
Cannabis has been a part of my life since I was born. I’m 39 now and learning more every day. It’s as if I didn’t really start to take in life until my 30s. Things change and for me, things became clearer. The direction in which I wanted to go was forming. I now know what my passion is and where it lies. My passion is to help the world, to make it a bit better while I can.
To see that as few suffer as possible and to help spread the knowledge of medical marijuana and the stories of the people in the MMJ community. I would like to tell you just a bit about cannabinoids and introduce you to part of the passion behind Marijuana Writers, a young man named Xander Chase Priest.
Cannabinoids may have helped him, but we’ll never know. I want this not knowing feeling, to never be experienced by anyone. The cannabinoids found in cannabis are proving to be effective treatments for a multitude of seizure disorders. As a parent who knows the suffering of watching a child suffer hundreds of micro-seizures a day, I believe that cannabis should be medically available.
Not only medically accessible to everyone in America but everybody in the world. I have read countless studies on marijuana and its effectiveness in helping to manage symptoms associated with seizures as well as its ability to prevent them. My son suffered from a genetic disorder that is known as Menkes Disease.
Xander was born a happy healthy little man. He was as normal as you or I at first. Being a father of 6, I know kids very well. Xander started to become a bit cranky around 4 months old. I thought wow this boy is going to be a handful. At his 6-month check-up my wife and I received the most devastating news a parent could imagine.
Xander’s doctor sent us over to the Children’s hospital to have a test done. We weren’t even sure what was happening at this time. She said it could be nothing but she wanted to be sure. So off we went straight to the doctor’s appointment. The test was performed and we learned that day about this fatal genetic disorder called Menkes.
Several days later we received a call from the hospital staff and were asked to come in for an appointment that afternoon. It was at this appointment they told us the horrible news. They confirmed that Xander had this rare genetic disease and was not going to survive.
Menkes Disease only affects one out of every 250,000 babies born on average. Menkes Disease only affects boys because it is a genetic default that’s located in the X chromosome. When a child is born with Menkes Disease their bodies ability to process copper is not there. Without the capability to process copper, your internal organs will not grow, and your central nervous system eventually will shut down.
Cannabis oil was not an option for my son three years ago much like it is not an option for many other children or adults out there today. This is something that we here at Marijuana Writers aim to do everything we can, to help change.
Cannabis does more than just help the children. Marijuana will dramatically help the parents of these children as well. To not to have had to watch my son suffer through hundreds of micro-seizures a day would have been a blessing.
So many trips to the Children’s Hospital, so many trips to the doctor’s office. For my family, this came to an end on July 11th, 2013 when our son Xander Chase Priest lost his battle with Menkes. We’d love it if you would share his page and help bring awareness to an issue that is being ignored by our political leaders.
As this story is tough to tell, and I sit watery eyed, I must take a break. There will be more to come if you want to learn more. Finding time for this is hard. Making time for this is a must. Thank you for reading this and please share this with everyone.
Together we can help change the world. A single seed can tip the scale. Be the seed! CBD-Only laws are not enough as CBD by itself is not effective. Only whole plant therapy will work. Say no to CBD-only laws and help save lives with cannabis. Support marijuana legalization. Contact The White House . Tell them to stop the madness and games and legalize medical marijuana.