WATERLOO | A mother described the anguish caused by her infant son's illness and the hope medicinal marijuana can ease his symptoms during a panel discussion Thursday night.
The War on Drugs Task Force -- a subgroup of the Cedar Valley Citizens for Undoing Racism -- continued to raise awareness of its fight to decriminalize marijuana in Iowa.
The advocacy group hosted a small panel of speakers on the UnityPoint-Allen Hospital medical campus Thursday evening.
"One of the issues we're working on is decriminalizing marijuana at the state level," said Erica Johnson, the immigrants' rights and racial justice advocate for the American Civil Liberties Union office in Des Moines.
Johnson was joined on the panel by Brienna Decker, whose 3-year-old son, Garrett, suffers from severe epileptic seizures. Garrett's doctors have prescribed a battery of five different drugs, most of which are ineffective and have potentially damaging side effects.
"This changes your life," Decker said of her son's seziures. "They change your hopes, your expectations and your freedom. They change your views on what you've been told is a gateway drug."
Dekcer is frustrated because medicinal marijuana has been shown to be an effective treatment for people who suffer from epilepsy, yet the drug remains illegal in Iowa. Last spring, the Legislature legalized the medicinal use of limited amounts of cannaboid oils, but the law has been criticized by advocates as too restrictive. Though cannaboid oils are now legal, the criteria for qualifying for them are narrowly defined, and production of the oils within the state remains illegal.
Decker choked back tears as she recalled her son's first seizure, how even when he woke from it he had lost the ability to control one side of his body, and how each subsequent seizure has robbed him of a little more functionality.
Medicinal marijuana could ease her son's disorder, but getting the drug legally remains difficult. She could buy it in a state where marijuana is legal, like Colorado or Oregon, but would risk a felony charge if she brings it back to Iowa. And that's saying nothing of the cost.
"The estimated cost that my neurologist gave to me for a two to three months supply would be $900," Decker said. "It's a cost we really can't fathom."
The sacrifices Decker has made already to pay for her son's medical treatment are significant.
"We sold our home -- his home -- to buy a smaller more affordable home to make it work," Decker said. She also left her career to remain at home to care for her son.
Decker and a group of like-minded parents with epileptic children have been lobbying the Iowa Legislature to legalize medicinal marijuana since last year, but she's worried she is running out of time.
"I ache when I wonder what could have been different if medicinal marijuana had been his first drug," Decker said. "As it is, I'm hoping it will be his sixth."