Parents Jari Sugano and Reid Kaneshiro have a full plate since getting married. Both work full-time and raise two special needs children.
“It’s extremely challenging,” said mother Jari Sugano. “I think its a struggle everyday, I think for the most part, people don’t really realize that.”
Sugano’s first child, Austen, now 8 years old, had complications during birth. He had to live in a bubble during the first year of his life and he was eventually was diagnosed with a form of autism known as Asperger’s. A few years later, healthy baby MJ was born. But at three months old, she had her first seizure. Then three months later, she had another one.
“She had a respiratory arrest,” Sugano said. “She was intubated at Kapiolani (Medical Center) in the ICU and at that time, they sort of figured out she had a rare condition called Dravet Syndrome.”
Dravet Syndrome is an extremely rare disorder causing uncontrollable seizures in children.
“It’s so rare, but even in this day and age,” pediatric neurologist Dr. Gregory Yim said. “There’s no cure. It’s a very difficult to control seizure disorder.”
Medication is used to control the seizures, but for MJ, nothing seems to be working.
“We’ve tried different medications, different combinations of medications,” Dr. Yim said. “We’ve even tried medications that were not even approved at that time. So we have gone above and beyond and this is a wonderful family, very resourceful, and have really done all of the conventional therapies. They’ve exhausted everything.”
The Suganos have even flown across the country to see specialists in Florida and Chicago. Still, MJ averages a hundred seizures and small twitches a week.
“Right now, we are at a point where we’re going alternative medicine, in a sense a little extreme, we are looking at medicinal marijuana,” Sugano said.
They obtained a medical marijuana card and started growing marijuana legally to try to use cannabis to treat the 5-year-old’s seizures.
“From October, I was toying with some of the juicing of the leaves and some of the buds since I didn’t have much material, but as of two or three weeks ago I was able to get enough to make a formulation which was a more concentrated oil,” Sugano said. “We’ve had her on this non-psycho active oil of cannabis for about 2-3 weeks.”
Dr. Yim did not prescribe the medical marijuana for MJ, but supports their effort to try alternative medicine. The Suganos juice the plant and extract what’s known as CBD from the marijuana. Doctors say CBD is not the part of the plant that makes you high.
“There’s the THC, the tetrahydrocannabinol, and that’s the psychoactive portion and then there’s cannabidiol which is the CBD which is the medicinal portion,” Dr. Yim said. “So really what we are looking for is the cannabis strain that has cannabidiol and very little to none of the THC. We are not looking to make these kids high, we are looking to use the CBD component for medicinal purposes.”
So far MJ is showing signs of improvement with one week free from seizures, starting to walk a bit and is also talking more. But the impact of using cannabis in children is not yet known.
“What we really don’t know is what effect it has on brain development,” Dr. Yim said.
But for the Suganos, that’s the chance they are willing to take to try to help their daughter.
“It’s very controversial right now, but if it’s your child, you are going to do whatever it takes to make the seizures stop, when it’s something you are battling every day,” Sugano said.
It’s so controversial, families with children like MJ are moving to California and Colorado to get access to medical marijuana for treatment.
“This is a unique situation,” Dr. Yim said. “We certainly aren’t recommending that any seizure patient tries cannabis.”
Medical marijuana is legal in Hawaii if you have a prescription from a doctor.
Senate Bill 2418 was drafted this legislative session in MJ’s name to help people with a medical marijuana card access to get cannabis from out of state. The Suganos say they have no idea what kind of marijuana they are getting here and need to be able to get marijuana plants from places that have marijuana lab testing because they need plants that are low in THC so they can use the non-psychoactive cannabis to treat her condition.
So far, the MJ bill has died in the Senate and failed to move out of committee.