COLORADO SPRINGS – An attack seizes Chaz Moore’s body, stealing much of his breath. Spasms in his throat, lungs and diaphragm cause the 17-year-old to speak in hiccups, one syllable at a time.
He says it feels like a grown man is jumping on his chest as the muscles in his belly roll like waves.
Chaz Moore, 17, lights a pipe containing medical marijuana at his home in Colorado Springs on Feb. 14. All photos by Joe Mahoney / I-News
Chaz opens a jar labeled MMJ, pulls out some fresh green buds and crumbles the marijuana into a small pipe. He lights up the bowl and inhales as deeply as possible through the spasms, turning to blow smoke out his bedroom window.
A second puff, a deep cough and the attack passes.
Chaz is one of 41 children under 18 in Colorado who have a medical marijuana license, according to the most recent data available from the Colorado Department of Public Health and Environment.
And he’s convinced that marijuana is saving his life.
His doctors have told him he is one of about 50 people in the world diagnosed with myoclonus diaphragmatic flutter, an affliction causing muscle spasms that can recur dozens of times a day.
Until a couple years ago, Chaz was a healthy kid, except for some childhood asthma that he was outgrowing. He played in his school band and on a baseball team.
Then he started getting hives and the mysterious spasms. At first, the attacks came three to five times a week and his family rushed him to the hospital each time.
- State, federal laws ban medical marijuana at school
- Research shows adverse effects of marijuana on teens as drug use among students appears to be rising
- Part 1 of this series examined the 45 percent increase in drug violations reported by Colorado K-12 schools in the past four years
- Part 2 looked at two cities – Colorado Springs and Fort Collins – with different approaches to regulating marijuana around schools
About this project
Doctors tried treating him for allergies and gave him inhalers, along with high doses of painkillers and anti-anxiety drugs to relax his body.
“One week, we went nine times to the ER,” said his dad, Shan Moore. “We were going nuts, just totally freaking out. Nobody knew what was wrong.”
Doctors in Colorado Springs referred the family to National Jewish Health in Denver, where Chaz had an attack in an exam room. One of the doctors who observed the spasms had treated a patient with the same rare illness nearly 20 years ago.
Chaz finally had a diagnosis and began treatment at Children’s Hospital Colorado, where his pediatric neurologist tried a variety of medications. At one point, he was taking a cocktail of 16 pills three times a day.
The medications would work for a time, but not consistently.
So Shan Moore said he raised an “insane” idea with Chaz’s doctor – marijuana. He had seen reports online that it might help some patients with multiple sclerosis.
The father said he hesitated to consider marijuana in part because his own relationship with the drug goes “way back.”
Shan Moore first tried marijuana at age 10, became a self-described pothead and used everything else he could get his hands on. By his mid-30s, he said he was dealing drugs and wound up in prison for three years when Chaz was just 7.
Now 41, Moore says he’s been clean for several years. The last thing he wanted to consider was getting his son started on marijuana.
But the effects of the high doses of the prescription drugs were also alarming. The family decided to give marijuana a try.
Chaz said he had tried pot once before and didn’t like feeling high. Now he rarely experiences that feeling because the family shops for low-potency marijuana.
He has fine-tuned his medication over the last year. He starts each day with edibles like marijuana-infused peanut butter and jelly sandwiches or marijuana cheesecake.
The food has higher levels of chemicals that seem to fend off Chaz’s attacks and stay in his system longer, without the psychoactive effects that cause a high.
His friends have never hit him up for marijuana, Chaz says, and he believes kids who abuse the drug are harming patients.
“You’re taking away from my medicine,” he said. “Even though you’re out there enjoying it, you’re messing with my medicine.”
Chaz no longer uses any other medications, but the marijuana created a new problem.
His school district, Harrison District 2, refused to allow the school nurse to give him marijuana. The family switched Chaz to a closer high school, hoping he could walk home when he had an attack, use marijuana and then walk back.
But the family said district officials didn’t like that idea either, telling them they feared Chaz would be impaired and disruptive.
District spokeswoman Jennifer Sprague declined to discuss Chaz’s case and said both federal and state law bar the district from administering marijuana.
“I was doing fine,” Chaz said. “I wasn’t disrupting anybody. My eyes weren’t red. I wasn’t smelling of pot. I was doing all of my work and wasn’t hurting anyone.”
Last April, after he started having as many as 35 attacks a day, Chaz enrolled in an online school.
Now he said he feels like he’s on house arrest, stuck in his bedroom with a small Dell laptop.
He’s lonely and says he sometimes loses track of what day it is because of the monotony. He’s more than a year behind his peers, but determined to get an education and become a counselor for kids in hospitals.
His dad shakes his head over the battles they’ve fought.
“Medical marijuana saved his life, but ruined it all at the same time.”
–Shan Moore, Chaz’s dad
–Shan Moore, Chaz’s dad
“Medical marijuana saved his life, but ruined it all at the same time,” Shan Moore said.
The family spends about $1,000 a month on various marijuana products and shops at five different Colorado Springs dispensaries. The father and son have become regulars on the pro-marijuana circuit, speaking at conventions.
Being so vocal about the benefits of marijuana has been costly. The father said he lost one job because his bosses didn’t like having such an outspoken employee. He now splits wood and trims trees, picking up jobs where he can. His wife works at a Denny’s.
Chaz is on Medicaid. The father said, altogether, they visited emergency rooms 117 times prior to starting marijuana. Now Chaz hasn’t been to the ER for more than a year and only goes to the doctor for routine checkups.
He doesn’t like marijuana – the taste of the food or the smell of the smoke. He feels guilty using it in the home he shares with his grandmother. He knows the damage drugs can do to a family. Right now, he sees no other options.
“If I couldn’t access marijuana,” Chaz said, “I would probably be dead.”
Contact Katie Kerwin McCrimmon at firstname.lastname@example.org.
Don’t expect to see students – or teachers or other staff members –legally smoking or consuming marijuana on school grounds, even if they possess medical marijuana cards.
The Colorado Association of School Boards certainly won’t be drawing up sample model policies to permit sanctioned use of the drug on campuses, said Brad Stauffer, associate executive director. In fact, Colorado school districts have begun to adopt policies that specifically spell out the opposite.
“We feel the laws in place clearly support what our policies say, that is, that the use of medical marijuana is prohibited in schools,” Stauffer said. He cited the Colorado Medical Marijuana Code, adopted by the legislature in 2010, which clearly prohibits the use or possession of marijuana in a school or on a school bus.
In addition, the constitutional amendment passed by Colorado voters in 2000 legalizing medical marijuana stated employers do not have to accommodate the use of medical marijuana in the workplace, Stauffer said.
“And on top of that, federal law requires that districts that receive federal funding have to have drug-free workplace policies in place,” he said. Federal law views marijuana as an illegal drug.
–Rebecca Jones of Education News Colorado
Excerpts from a doctor’s recommendation for marijuana
Chaz Moore, 17, carries this letter from his doctor, Abigail Collins of Children’s Hospital Colorado, in case he is questioned about his medical marijuana:
Rationale: “Failure to respond to a host of other medications including Keppra, clonazepam, valium, morphine, Benadryl, Xanax, inhaled lidocaine, Dilantin, Tegretol, Depakote, Flexeril, Artane, IVIG and Solumedrol … Previously Chaz was taking benzodiazepines while at school for episodes of breakthrough myoclonus which was sedating and ineffective to control symptoms. We now have Chaz on a medication regime which actually helps reduce the frequency and duration of his spells and have found a medication which reliably aborts the attacks (THC) when they occur.”
No side effects: “He has no significant side effects to the THC and is functional on the medication.”
Should be in school: “I strongly recommend that Chaz return to school on his current medication regimen and be allowed to take the THC which has been prescribed by a physician to treat his medical condition.”
Learn more about Chaz Moore’s rare disease
Name: Myoclonus diaphragmatic flutter
First identified: 1723 by Antony van Leeuwenhoek, who suffered from the disease and invented the microscope
Extremely rare: About 50 cases ever reported
National Jewish case in early 1990s: A 13-year-old girl was hospitalized for eight months at National Jewish Health in Denver. Her illness initially stumped doctors. Psychological experts believed at first that anxiety might have brought on her attacks. But they also occurred in her sleep.
Drug therapies failed: No improvement from Ativan, Tegretol, Valium, Prozac, Catapres or biofeedback.
Mystery solved: A member of the team caring for the girl, Dr. Anthony Liu, became convinced that the cause of her illness was physical, not psychological. He finally diagnosed diaphragmatic flutter.
Full recovery: The team decided to try a procedure called a “nerve crush” paralyzing the phrenic nerve that gives signals to the diaphragm. The nerve regenerated.
Quote: “She got a full recovery and the symptoms disappeared. I would liken it to rebooting your computer. At some point, the electrical activity gets out of whack and you have to allow it to regenerate,” Dr. Peter Cvietusa, Denver Allergy, Asthma and Immunologist, now with Kaiser Permanente. Cvietusa was a fellow at National Jewish and part of the team that cared for the girl. He is the lead author of a research paper about her rare condition.
Further reading: Diaphragmatic Flutter Presenting as Inspiratory Stridor
The Government regulated Incorporated war on Marijuana and Hemp have destroyed the country we live in by replacing what is a totally natural substance with a host of chemical compounds for our every need. Problem is that the chemicals will kill us, the Marijuana and HEMP will save us.
The Kentucky Marijuana Party Activists will address any issue concerning Cannabis/Marijuana/Hemp Prohibition, Human Rights and Civil Rights, as we believe in adhering to the “original” Constitutional Rights of all United States Citizens.
We most certainly believe in the REPEAL OF THE PROHIBITION OF MARIJUANA/CANNABIS AND HEMP!
WE are the people of the United States of America. WE have the right to “life, liberty, and the pursuit of happiness!” WHERE THE FU*K IS IT???
K.E. Hardesty, Gatewood Galbraith, God, Nature,
We first told you about it this past October when police seized nearly $2 million in cash and thousands of pounds of marijuana in Lexington and Georgetown.
This week the last of six men plead guilty in Lexington.
According to the U.S. District Attorney Kerry Harvey, a Mexican man admitted in federal court Tuesday that he and six others conspired to distribute thousands of pounds of marijuana in Fayette County worth
well over a million dollars.
“In terms of marijuana there’s no question this was an extraordinarily large find,” Harvey said.
Harvey also said during the course of his guilty plea, Narcisco Munguia Pineda, 41, acknowledged that law enforcement discovered 300 pounds of marijuana in the trunk of his car when he was stopped in the Hamburg area by law enforcement on October 4, 2011.
Authorities then executed a search warrant for his residence on Ice House Way and found more than 3,000 pounds of marijuana along with two firearms.
Previously, Ismael Rodriguez Garcia, 37, Julio Cesar Robles, 33, Gilberto Rodriguez Hernandez, 32, Raul Rodriguez Rojas, 31, Luis Osvaldo Rodriguez Rojas, 38, each of Mexico, and Joaquin Diaz Verdin,19, of Lexington, pleaded guilty to their roles in the conspiracy. They were indicted by a federal grand jury in late 2011.
At the same time as the discovery of the marijuana in Lexington, law enforcement was performing surveillance at a residence at Starting Gate Point in Georgetown, Ky. The surveillance culminated in a series of traffic stops of vehicles that left the Starting Gate Point residence.
Police there, seized 300 pounds of marijuana they found in a trunk of a car at the residence on Starting Gate Point and $1,800,000 in cash.
The investigation was spearheaded by the U.S. DEA with assistance from the Lexington Metro Police Department, Georgetown Police Department, Versailles Police Department, Richmond Police Department, Kentucky State Police, Frankfort Police Department, Nicholasville Police Department, Winchester Police Department, Garrard County Sheriff’s Office, Kentucky Office of Attorney General, and Scott County Sheriff’s Office. The United States was represented in the case by Assistant United States Attorney Robert M. Duncan, Jr.
All six men are scheduled to be sentenced in May.
Uploaded by therealjamesbud on Jan 24, 2012
Memorial Day Weekend 1997 Featuring speeches from Gatewood Galbraith, (The Last Free Man In America), Jack Herer (Godfather of The Hemp Movement), Chris Conrad, (Hemp Guru), & Elvy Musikka, (Federal Medical Marijuana Patient & advocate)& Master of Ceremonies Derrik DeCrane. Music by Teddy Woodward & The Hemptations. Rainbow Farm was located in Vandalia, Michigan & was a cannabis friendly community. They had great concerts & speakers. The government came in later & killed the owners & stole the farm from the legal birth right of the son, Robert 1 week before 9-11 (September 3rd & 4th,2001). Tom Crosslin & Rollie Rolhm were the owners & each one of them were systematically gunned down & tortured after being out numbered 300 to 1. In order to stop a memorial day concert, that was to start a signature campaign to legalize cannabis in the state of Michigan. God Bless Robert & keep him safe. Our Government in the name of,” The Drug War”, is committing crimes against citizens of this country on a daily basis. We must never forget those who have paid the ultimate price for freedom. We must hold those accountable who did this. Zero Tolerance makes zero sense.
* Terrible tragedies like Rainbowfarm story have been happening on a regular basis every since it happened. It’s not the Rainbowfarm way to preach a negative message.We are peace loving individuals who want you to know that the only way we can stop these injustices to carry on in the name of the drug war, we must come together on this topic & not be divided by issues like race, sexual preference, or religion. We must vote for the change we want for our country. Tom & Rollie loved America & flew the flag everyday because they were RED, White, & Blue, Proud American Tax payers.
Why I Do What I Do…
I can never remember the details. The “detail” section of my brain just does not work very well. I’ve had Major Depression, and Chronic Anxiety as well. I also, among other things, have had a “Cerebellar Vascular Accident (CVA) which is about the same as a ruptured aneurysm/stroke in 1998.
It does not matter though, because I can remember where to find the information that I need, when I need it!
At the same time, the philosophical portion of my brain tends to work overtime. I spend most of my waking day on the internet, scanning for more and more information for which I know I may not remember the details of…
…but I will always know where to go to find that information when I need it!
I do this by scanning the internet for anything and everything from Cannabis issues, political, social, economics, healthcare and the conspiracies thereof, and then back to the daily news and beyond.
I never had the opportunity to go to college, and I received my education in “Little’s” such as our former President Abraham Lincoln, who, incidentally, was also from Kentucky.
I read, and read and read some more and then ask “why?” or “why not?”, and then I search for more.
I believe as George Carlin did when he said that “children should be taught to question”. Question everything. Nothing should be taken for granted nor at face value.
In the 1990’s my Father and I were discussing Hemp one day and he advised me that I should seek out Gatewood Galbraith and go see him. That, “He knew all about it”. At that time I was busy raising kids and working and taking care of Mom and Dad on the weekends. I did not even have a computer!
I began about 2003 searching out marijuana information on the internet.
My Dad had died in 2001 and three months prior to that had called me one day and asked me if I could find him “a little pot”. As I was then ignorant of any kind of medicinal use of Marijuana, and he had COPD and Heart Disease. My only answer to him would be, “I’d love to Dad, but I’m afraid if you tried to smoke it at this point it could kill you.” His lung capacity was near zero.
At that time we knew nothing of the “healing oil”. So in 2003 I was browsing one day and it came to my mind to search for “medical marijuana”.
The rest is history. Once I found how to access the information nothing was gonna stop me from trying to spread the message – through as many sites as I could possibly access. It suffices to say that in the last seven years or more I have learned a lot. The whole world has learned a lot.
I have been through many changes in my life and am thankful for most of them.
My only hope is that the Earth has a chance to recover itself before it is too late.
Much of that depends upon how we choose to “FREE” this God given gift of Cannabis, and what is done with it once it is.
I have seen so many abuses against humanity in general that I cannot ignore it. So therefore, I not only am an activist for anti-prohibition, but I have very strong feelings concerning other issues as well.
Mountain Top removal, strip mining, coal ash and the illness and death as a result of it. Human trafficking and the death penalty issue, prisoners rights and issues, including the “DRUG WAR” Prisoners as well. Then there are Civil Rights, Human Rights, the Bill of Rights, Constitutional Rights, Religious Rights and the list could go on forever.
I never thought that I would be qualified to be a politician, nor a lawyer, nor did I ever think that I would want to be, mainly because I do not want to be put into a position where I can no longer say what I feel is right, but must succumb to the “for the greater good of the people” clause which they use in order to be able to lie to us with a straight face.
And since there are so many differing opinions within any given movement of Activists, I feel it is necessary to have citizen reporters and/or journalists. That is where I felt that I would fit in, as I could bring the news of all of the important issues which affect our lives straight to the web. I have an occasional opinions on a given subject, but basically I want to give you the information that you need in order to make up your own minds about what you think is right.
After all, It’s not about what I as a single being wish to have happen. It is about a Democracy which believes in the right of the people to decide for themselves who they want in office and how these laws are carried out. In the end, it is only YOU that can help save our Earth and bring it to peace by petition, voting rights, etc., After all, as Gatewood once said: There are only two ways to win a war. One is politically and the other to take it to the streets. I damn sure hope the streets isn’t where we end up.
Peace and Prayer to You All!