Pa. family joins wave of medical marijuana 'refugees' relocating to Colorado
LONGMONT, Colo. — Like a lot of kids his age, 12-year-old Blake Boninfante likes watching music videos on YouTube, loves to swim in his neighborhood pool and has a thing about trains.
It's his medical issues that, for now, stand in the way of him enjoying what's considered a "normal" childhood.
Until recently, Blake and his parents, Nicky and Sara Boninfante, lived in southern Chester County. Less than two months ago they moved to Longmont, Colorado, northeast of Boulder.
"We came here because, as parents, we want to do anything we can to help our son," Sara said. "He has uncontrolled myoclonic epilepsy. He's also on the spectrum of autism and he's pretty much nonverbal. ... What Blake has to go through is horrible."
Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles that usually don't last more than a second or two, according to the Epilepsy Foundation.
Blake has at least a hundred a day, and sometimes up to 500, his parents said.
"The mornings are the worst," Nicky said.
'Refugees': The Boninfantes are part of a migration of families to Colorado, all seeking treatment that's not legal in their home states, Sara said.
"We're called 'American medical refugees,'" she said.
Some of those families have started the American Medical Refugee Foundation, based in Colorado Springs, according to the foundation's Facebook page.
The Boninfantes still own their Chester County home but said they expect they will live in Colorado for at least a year while Blake is taking two kinds of medications derived from medical marijuana.
Full access: "We've gone down the mainstream-medicine path, we've done a lot of alternative stuff," Sara said. "We wanted to have full access to cannabis to try to stop his seizures. So that is why we're here: We want to get seizure relief for him."
The couple signed a lease on their Longmont apartment in September, which allowed them to establish residency and apply for a "medical red card" for Blake, they said. After being examined by two doctors, Blake was granted the red card, which gives him access to medical marijuana.
It's been a long road so far, the Boninfantes say, and they know there's still a long journey ahead.
Reason for hope: But they have no shortage of hope.
"I'm going to choose to be very optimistic on this journey," Sara said. "I have to be. It's already helping Blake."
Blake has been taking Charlotte's Web hemp extract — which is cannabidiol (CBD) oil — since February, his parents said. CBD oil doesn't get users high, according to ProjectCBD.org.
"Within six weeks his seizures decreased by about 40 percent," Sara said. "So we're like, 'OK, we're on to something here.' Are we where we need to be? No. But we're on to something."
Blake also takes an anti-seizure drug and is on a high-fat, lower-carbohydrate diet, both of which work with the CBD oil to help reduce his seizures, Sara said.
Whole-plant therapy: But it's not enough. Blake needs full access to what's known as whole-plant therapy, his parents say.
"We found out that while CBD oil ... can help some patients, for a lot of patients — especially with epilepsy — that's not enough," Sara said. "You're going to need to add what's called THC or other parts of the marijuana plant called THCA."
THCA was added to Blake's medication regimen on July 21, his parents said.
"Our goal is to each day reduce the seizures," Sara said. "I think you just take it day by day. When you're a parent of a special-needs child, a seizure-free moment is a great moment."
Cognitive changes: Medical experts are starting to look at cannabinoids to treat a growing number of diseases and disorders, including autism, Sara said, giving the couple hope that the medicine Blake takes for his seizures could improve his cognitive functions as well.
Sara recounted recently seeing Blake, on his own, drag a chair to their refrigerator, climb up and retrieve his iPad.
"He wasn't doing things like that before," she said. "There are little connections being made that we haven't seen in the past, and those little things are big things to us."
Nicky said he's seen cognitive improvement in his son — specifically, Blake's reaction time is quicker.
The small victories show the Boninfantes that Blake's quality of life is improving since he started taking CBD oil, they said.
"I know it's not going to be a miracle," Sara said of medical marijuana, and she knows their son isn't suddenly going to become a "normal" kid.
"But then again," she asked, "what is normal?"
Legal roadblocks: Despite marijuana being legal in Colorado, there are a number of doctors and hospitals that refuse to use it as a treatment because it remains illegal federally, Sara said.
The couple also expressed exasperation at Pennsylvania politicians and federal officials for what they see as foot-dragging.
"Until this is resolved on a federal level, there are going to be issues for families," Nicky said. "And we're very frustrated with the Pennsylvania House's inability to pass a bill. ... It's frustrating that elected officials are (ignoring) the will of the people. The state is oppressive when it comes to medical marijuana."
The Boninfantes pointed to a poll done in April by Quinnipiac University that showed 88 percent of Pennsylvania voters support medical marijuana being made legal.
'Prohibition': "I'm begging the state of Pennsylvania to pass a comprehensive cannabis bill ... (that legalizes) whole plant therapy," Sara said. "We are in a marijuana Prohibition. I think it's time to end the prohibition across the board."
It particularly gripes Nicky that the federal government has made no real steps toward legalization while its Department of Health and Human Services holds the 2003 patent on medical marijuana — patent No. 6630507.
"Tax it and make money. Lots of money," he said. "Our economy could be boosted tremendously."
Reclassification: Sara said the federal government needs to reclassify marijuana so it's no longer a Schedule 1 drug. If that happens, she said, federal grant money could be used for research of the plant.
But she believes there's been plenty of research already, going back many centuries. According to ProCon.org, ancient Greeks and Egyptians used marijuana as medicine.
Sara continues to research the use of marijuana as medicine, notes and ideas filling in a special notebook. She belongs to several advocacy websites and hopes to connect with other "American medical refugees" in Colorado, but said most of them live in the Colorado Springs area.
Drag-race team: Nicky's job requires him to travel regularly, so the Boninfantes needed to be closer to Denver International Airport, they said. He is crew chief for the Kalitta Motor Sports drag-racing team.
Blake, through his iPad, said he loves watching "my papa's races."
"Blake is frustrated by his seizures," Sara said, and has lived much of his life on the sidelines because of his issues. "I think he understands a great deal and can't communicate."
Despite his challenges, Blake is a cheerful child. On a late July afternoon, he beamed at a visitor with an infectious smile. He was happy to show off his train set and seemed untroubled that his medical issues were the subject of conversation.
"He's overall a very happy kid — a very joyful child," Sara said. "We just want a seizure-free life for him, whatever it takes."
— Reach Liz Evans Scolforo at firstname.lastname@example.org.