Jari Sugano was desperate to find relief for her active five-year-old daughter, Maile Jen Hope Kaneshiro, who suffers from Dravet syndrome, a rare and intractable form of epilepsy. Maile or MJ, as she is known by her family, suffers from five seizure types, including grand mal seizures where she loses consciousness and has violent muscle contractions.
Her family and doctors have tried over a dozen drugs, as well as non-approved drugs, prescribed by the leading pediatric neurologists in the nation. In her first four years, MJ had thousands of seizures a day and spent long stays in children’s hospitals in Hawaii, Chicago and Miami. The family traveled the country and spent every penny they had seeking the best medical advice and care for MJ—to no avail.
Then in 2013, a CNN story by Dr. Sanjay Gupta told the story of Charlotte Figi who suffered from Dravet syndrome and how oil extracted from marijuana stopped her seizures.
Her family jumped on the story, applied for and received a Hawaii state medical marijuana card. They proceeded to feed her leaves from marijuana plants on a daily basis—but again to no avail. That’s when the Suganos’ story took on the aspects of the film, Lorenzo’s Oil, in which two parents, searching for a cure for their son who suffered from ALD, formulated their own homemade cure using extracts from canola and olive oils.
Her mother did research on the Internet and found that it was specifically a high CBD, low THC marijuana oil that stopped Charlotte Figi’s seizures. Further research on the Internet unveiled a method shared by support groups to extracted THC-A oil.
“THC-A, like CBD, dos not have psychoactive properties,” said Jari Sugano who testified today at a House Health Committee hearing on a resolution (HCR49/ HR29) to study the feasibility of creating a system of regulated medical marijuana dispensaries in Hawaii.
“We froze both the dried buds and high proof alcohol to extract the resins from the cannabis. The alcohol blows off and the resin which remains is a sticky powdery substance which we put into a high grade coconut oil. Maile still suffers from seizures, but the severity and quantity has subsided dramatically over the past three months.”
Unfortunately, the family ran out of the oil recently and her seizures returned with a vengeance.
“We are true believers that cannabis helps minimize her seizures and now understand the seriousness of maintaining a constant, safe and lab tested supply of cannabis oil,” Sugano testified. “In Hawaii, it is currently legal to use marijuana, its oils, and products for medical purposes. However, we lack access to global research and technologies which allow us to use these products properly and to its fullest potential. Establishment of a dispensary or other safeguards in Hawaii could increase the efficacy and healing potential of Hawaii’s existing medical marijuana program.”
“Maile’s story gives us one of the most dramatic and compelling reasons yet why we need to come up with a plan to create a legal dispensary for medical marijuana in Hawaii,” said Representative Della Au Belatti, Chair of the House Health Committee.
“Moreover, it’s not just Maile, but the thousands, young and old, in Hawaii who suffer from cancer and a wide range of other debilitating diseases that could find relief and a better quality of life with better access to medical marijuana. It is unconscionable for us to walk away from them and do nothing. We are one of just a handful of states who currently legalize medical marijuana without having access via some form of a system of dispensaries. We need to change that sooner rather than later.”