SANTIAGO, Chile – Paulina Bobadilla was beyond desperate. The drugs no longer stopped her daughter's epileptic seizures and the little girl had become so numb to pain, she would tear off her own fingernails and leave her small fingers bleeding.
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Bobadilla was driving on a mountain road with Javiera, intent on ending it all by steering their car off a cliff.
"All I wanted to do was to die along with her," the 34-year-old mother recalled of that day in April 2013. "I told her: 'This is it.' But then she said, 'Mommy, I love you.' I looked at her and I knew I had to continue fighting."
Bobadilla's desperation to ease her daughter's condition is an emotion familiar to other Chilean parents who say medical marijuana can help their children and who, rather than wait for Congress to act, have taken matters into their own hands.
Despite the risk of jail time, about 100 parents have formed a group, Mama Cultiva or "Mama Grows," to share knowledge about cultivating marijuana to extract cannabis oil for their seizure-stricken children.
In clandestine meetings, the parents exchange tips and listen to cultivation experts explain how to grow and reproduce plants. Bobadilla and most of the members grow marijuana in their backyards, even though they could face up to 15 years in jail for doing so.
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Chile allows consumption of the drug, but growing, selling or transporting it is illegal. Approval to use the drug as medicine is hard to win, and requires navigating a bureaucratic puzzle that most see as a waste of time. A proposal to decriminalize such use is making slow progress before lawmakers.
During a recent meeting of Mama Cultiva, a mother named Susana patiently separated leaves from a marijuana stem in preparation to extract oil while, nearby, her husband tended to their son who screamed as he convulsed in a seizure.
Susana, who declined to give her last name for fear of being prosecuted, and other parents later practiced the steps needed to reproduce plants with cuttings — a lesson that left them smiling with satisfaction.
Growing plants is slow work and members complain they sometimes must resort to buying from illegal dealers. Susana said one dealer even tricked her into buying the male strand of the plant, which does not produce the prized oil.
"I explained to him that it was for my sick son, that I needed marijuana from the female plant, but he sold me the male one," she said.
Gabriela Reyes, 23, credits the cannabis oil with saving her 7-month-old son. Lucas spent the first months of his life in a hospital, suffering up to 300 epileptic seizures a day, she said. When he no longer responded to anticonvulsion medication, doctors told her his condition was terminal.
Reyes learned about cannabis oil as an option and began adding a couple of drops to Lucas' baby bottle. Since then, she said, the seizures have dropped to about a dozen a day and the infant now is able to eat normally and recently tasted his first mashed potatoes.
In the case of Bobadilla's now 7-year-old daughter, giving her a few drops of the oil each day has made their lives bearable.
Immediately after beginning treatment last year, Bobadilla said, Javiera "began to sleep better and was less irritable. We began to see real results within a week: The seizures dropped from seven strong ones a day to just one."
Bobadilla decided to try marijuana after seeing a video about Charlotte Figi, a U.S. girl with a rare genetic disorder that caused hundreds of grand mal seizures each week and limited her ability to walk or speak. Cannabis oil has nearly eliminated her seizures and Charlotte, now 8 and living in Colorado, is able to walk, talk and feed herself.
A strain of marijuana that produces the oil but not the chemical that creates a mind-altering high has been named in her honor — Charlotte's Web. Her story also has led other families with seizure-stricken children to travel or move to Colorado to benefit from the drug's legalization there.
A municipality in Santiago, Chile's capital, recently allowed the country's first medical marijuana to be planted as part of a pilot program. A local university will use the project to research the effectiveness of the drug in treating the pain of adult cancer patients. Because Mama Cultiva focuses on children, it cannot participate.
Doctor Lidia Amarales, director of the National Service for the Prevention and Rehabilitation of Drugs and Alcohol, has acknowledged there is scientific evidence that marijuana is useful in specific cases, such as treatment of epileptic seizures. She warned, however, that the use of any drug on children could have negative outcomes.
A recent statement from Chile's national medical service and other agencies said the use of medical marijuana is "insufficient, while there's vast scientific evidence that shows its harmful effects."
Still, Mama Cultiva continues to grow in size as Chilean parents seek help for some 15,000 children whose epilepsy is not helped by standard medication, said Ana Maria Gazmurri, president of the Daya Foundation, a nonprofit group that sponsors pain-relieving therapies.
"We have to make sure that the rights of users, of patients, to affordable medicine ... is guaranteed before the pharmaceutical industry takes it all over," Gazmurri said.
Before starting her daughter on cannabis oil, Bobadilla, in fact, had struggled to come up with the $800 a month she needed for the girl's medicine and ended up selling her hair salon. While she can produce the cannabis oil for only about $100 a month, doing so has come at a great cost: Her brother was arrested in September when, after she ran out of marijuana, he helped her buy 23 grams from a dealer. If convicted, he could face up to five years in prison.
"I'm not even scared of going to jail," Bobadilla said. "What scares me is that they'll take away the medicine."
Eva Vergara on Twitter: https://twitter.com/evergaraap