Chaz Moore, sixteen, is a Colorado Springs student with a rare medical condition whose flareups are radically improved by medical marijuana. However, his high school won't allow Chaz (originally known by the pseudonym "Bill Smith") to medicate on campus. So now, after months of fighting, Shan Moore, Chaz's father, is laying the groundwork for a possible class-action lawsuit intended to resolve the situation.
Chaz's story was first made public in by the Colorado Independent in January. He suffers from an ailment called Myloclonus Diaphragmatic Flutter, which Shan describes as "a neurological disorder where, basically, all his nerves decide to misfire and his diaphragm, his upper-chest muscles and his throat go into seizures and spasms that make it difficult for him to swallow or breathe. One of his neurologists at Children's Hospital compared it to running a marathon every half-hour."
Here's a video showing what Shan calls a "mild" attack, as seen on the IAmBillSmith.com website:
Diagnosing the condition, which initially struck Chaz when he was fifteen, proved difficult. "It started with him getting a very bad case of the hives," Shan recalls. "An allergist got that under control, but the other symptoms just kept getting worse and worse. From January of 2010 until last November, we did roughly 110 trips to the emergency room, doctor visits or hospital visits to Colorado Springs or Denver. They tried treating it with morphine, Valium, Xanax. During one 36-hour episode, they even tried Fentanyl on him."
Check out another video showing Chaz in the hospital on meds like these:
Unfortunately, none of these treatments worked, and Chaz was in such a fog for so long that he doesn't even remember much of last year. But he improved dramatically after he received a recommendation to try using medical marijuana lozenges. The number of pills he took per day went from fifteen to four and the attacks became much more manageable. More recently, Shan says, "the neurologist took him off all his other medications except for allergy medicine, because nothing else was working -- and since he started on medical marijuana, we only have to go to quarterly checkups now."
Problem is, Chaz's school won't allow him to medicate if he has an attack on campus owing to the district's policy and a clause in Amendment 20, which legalized MMJ in Colorado. This edict contrasts sharply with the rules he had to follow regarding heavy prescription narcotics.
"When he was on Valium and Xanax, Chaz was able to carry a pill bottle on the bus," Shan recalls. "He would take it to school and they'd put it in a lockbox -- and if he needed it, he would go to the nurse, take his medicine and then return to class. But now, if he has an episode, he has to walk over a mile to go home if I can't pick him up, then wait for the episode to stop and walk back. So it's a safety issue, and he misses out on way too much school. And since his neurologist has only cleared him to go to school for a half-day, and then have tutors for the other half, walking a mile home and a mile back doesn't make any sense."
Recently, Greenway University gave Chaz a laptop to help him keep up with his studies -- a big help, Shan says. But at this point, he's considering a legal solution, in part because there are presumably more students who may be experiencing the same kinds of hassles as is his son.
"When we got our recommendation, there were only about twenty minors on the registry," Shan says. "Then, when I checked again in March, there were forty -- so it doubled in a quarter. That means there are at least forty kids out there, most of them pretty close to school age, who have been approved for this."
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As such, he's encouraging parents of such children to contact him at email@example.com to share their stories and potentially participate in a class-action lawsuit that would force schools to allow patients to medicate on campus. After all, he doesn't want Shan to have to go back on ineffective medication just so he can attend school.
"it's a safety issue," he says. "But it's more than that. Medical marijuana literally saved his life."
More from our Marijuana archive: "Cannabis edibles as breakthrough autism treatment? Mieko Hester-Perez tells Joey's story."