VIDEO: Bill Smith’s condition takes a dive as he speaks out more about MMJ laws

"Bill Smith" and family.

Chaz Moore–known as ‘Bill Smith’ to many–a high school student in Colorado Springs who uses medical marijuana to control a rare neurological disorder, has become something of a celebrity, with a web site, T-shirts and regular gigs as a public speaker. Unfortunately his condition has worsened, forcing him to finish high school with online classes.

Moore missed a year of high school when he was diagnosed in 2010 with Myloclonus Diaphragmatic Flutter, a condition that causes upper body seizures. Up until recently, he used prescription pharmaceuticals to reduce the frequency of the attacks and medical marijuana to limit their duration.

His dad, Shan Moore, told The Colorado Independent that the drugs limiting the frequency of the attacks no longer work and he is now suffering through 10-20 attacks a day. Cannabis still works to reduce the length of the attacks, but because he cannot bring his medical marijuana to school it is no longer practical for him to attend school.

“It’s become pointless to go to school if he can’t have his medicine there,” his dad said. With the marijuana, his dad said the attacks tend to last only 5-10 minutes, whereas before the family tried marijuana the attacks often lasted for hours and Chaz spent a lot of time in the hospital.

“Now, once he has his medicine he can be outside playing baseball and being a normal kids within a few minutes,” Shan said.

Shan Moore said the family works with a dispensary to identify strains of marijuana that are high in cannabinoids–which is what he needs–but low in THC, which is what he says normally gets people high.

“He doesn’t really get high,” his dad said, noting that his son uses a combination of edibles and the medical marijuana version of an e-cigarette, called a vaporizer pen.

Only about 50 people in the country have the condition Moore is afflicted with and he is now thought to have the worst case in the country. His dad said he recently underwent a spinal tap and may soon have another to look for underlying causes of the condition.

Speaking at medical marijuana meetings, Chaz tells people he is speaking out for the kids who need medical marijuana for various ailments but have trouble getting it or can’t bring it to school because even with medical marijuana legal in many states, laws are written to make it easier for kids to get morphine or other narcotics than to get medical marijuana.

He’s become quite the advocate,” his dad notes.

Here, Chaz speaks at a medical marijuana forum in Colorado Springs:



Because it was safer then all the other pharmaceuticals I was using and having to experiment with that would have physical side effects [that led me to have to stay] inside or in the hospital for days. With medical cannabis it can subside the symptoms of my condition and allow me to be functional and have a life as a kid; within hours or minutes of having an episode, I can be outside.

To see the I am Bill Smith web site, click here.

Scot Kersgaard has been managing editor of a political newspaper, editor and co-owner of a ski town newspaper, executive editor of eight high-tech magazines (where he worked with current Apple CEO Tim Cook), deputy press secretary to a U.S. Senator, and an outdoors columnist at the Rocky Mountain News. He has an English degree from the University of Washington. He was awarded a fellowship to study internet journalism at the University of Maryland's Knight Center for Specialized Journalism. He was student body president in college. He spends his free time hiking and skiing.

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