BERNIE— Tres Johnson wasn't expected to live through his first day. But 10 years later, his mother calls him "our little miracle," and says medical marijuana could greatly improve her child's life. Now, Brandy Johnson is joining the effort to decriminalize marijuana in Missouri in the hopes of helping her son's quality of life.
Tres, of Bernie, was born with diprosopus, which is Greek for "two faces." It is commonly referred to as cranial duplication. According to a report from the Dexter Daily Statesman, there are just 35 known cases of the disorder in the world. Most infants with the disease are stillborn. Only a few survive more than minutes or hours after birth, but Tres recently celebrated his 10th birthday.
He's inquisitive, enjoys toys and likes discovering new places. But life isn't easy. Tres has severe epilepsy. Johnson said that in the past her son suffered up to 120 seizures per day. Four to six times per week the seizures are so severe that Tres has to be resuscitated.
"He's died in my arms twice," Johnson said.
"We've been on every medicine you can name trying to get him help. Some things make a small difference for a few weeks, but it never lasts," she said.
Late last year, Johnson learned about a 6-year-old Denver girl who suffered from 300 grand mal seizures — which involve a loss of consciousnesses and violent muscle contractions — per day and found significant relief in cannabis oil. Because of laws and hospital policy, Tres' doctors were reluctant to consider the oil.
Johnson eventually found a form of the oil that is free of tetrahydrocannabinol, or THC, making it legal in Missouri. For the first two weeks, Tres' seizures decreased to five or six per day. The seizures eventually returned, but now, at about 50 per day, still far improved for the number he used to suffer.
"What I have personally seen this oil do really changed how I feel about the marijuana debate," Johnson said.
A more powerful oil is available in Colorado — but illegal in Missouri, where marijuana is deemed to have no legitimate medicinal use. Johnson believes that oil could completely change Tres' life.
Johnson and her son were in Jefferson City earlier this month, where she testified in favor of a House bill that would decriminalize marijuana, regulating it in a way similar to alcohol. Like Colorado and Washington state, the law would establish taxation and regulation systems for marijuana.
"Sometimes things in life don't work out the way you expect," Johnson said. "God always has another plan, and you just have to have faith in Him to carry you through."