For Parents of Sick Children, It’s Move or Break the Law

By Matthew Charles Cardinale Reprint | | Print |

Caden Clark has Lennox-Gastaut syndrome, a catastrophic form of epilepsy that causes him to have seizures from 10 to 20 times a day. Courtesy of the Clark Family.

SPOKANE, Washington, Mar 14 2014 (IPS) - Beth Collins recently picked up and moved from Virginia to Colorado, but it wasn’t for the typical reasons: new job, better schools, nicer weather. Collins’ 14-year-old daughter, Jennifer, has intractable epilepsy. Medical cannibis eases her frequent seizures. But it’s illegal in their home state.

“We got here the first week in December [2013]. She has been on THCA [a strain of cannabis],” Collins told IPS. “She takes it three times a day. We are seeing a 70 to 90 percent decrease in seizures. She’s been on the medication now for close to two months.”

Prior to the THCA, Jennifer tried a variety of drugs and diets, but they all had bad side effects, her mother says.

“She’s feeling better but she misses her dad, she misses her sister, she misses her friends. When you have a sick kid, we have a network of people it takes a long time to [build]. You have to start over again finding that support system when you move,” she said.

“Just she and I came. We want to make sure it works before we sell the house,” Collins said, adding that her family will probably be forced to permanently relocate to Colorado.

“I can’t leave with the medicine – we’ll be criminals if we do. They have pretty harsh fines [in Virginia]. I’d rather not be a criminal – it’s not how I want my daughter to see things, that if things don’t go your way, you’d commit a crime. I’d rather have her see us fighting,” Collins said, crying. “It’s emotional, it’s a hard thing. My family’s split.”

The Collins family is just one of hundreds that have migrated to the states of Colorado and Washington to access medical cannabis, or marijuana, to treat their children or other relatives, since voters in those states legalised the drug in the November 2012 elections.

An estimated 36,284 people moved to Colorado in 2013, almost 8,000 more than the year before, according to the Daily Beast. A good part of this increase is believed to be due to families migrating for medical cannabis, legal recreational cannabis, and cannabis-related business opportunities.

Caden and his mother, Kim Clark. The 10-year-old has been through numerous surgeries, including a partial lobotomy, which failed to stop his seizures. Courtesy of the Clark Family.

At least 200 families moved after cannibis oil was featured in a documentary called “Weed” by Dr. Sanjay Gupta of the cable television news station CNN.

One is the Clarks, whose 10-year-old son Caden has Lennox-Gastaut syndrome, a catastrophic form of epilepsy that causes him to have seizures from 10 to 20 times a day.

“He’s never had a seizure-free day in his life, ever,” said Caden’s mother, Kim Clark.

Kim moved with Caden from Georgia to Colorado after trying everything the legal medical community had to offer: prescription medications with severe side effects; a starvation diet; severing the brain hemispheres; even a partial lobotomy.

“We are not anti-science people. We are very pro-science people. Our child has had a lobotomy per science. It just didn’t work for him,” she told IPS.

The Clarks are on a waiting list for cannabis oil and said they had just received a phone call that their medicine might be ready as early as next week.

“We saw the special that Sanjay Gupta did on CNN about Charlotte Figi [a child whose epilepsy was cured by cannabis oil]. I took it to my husband, who is a narcotics officer in Atlanta, Georgia,” Clark said. “He’s the guardian of the drug vault, so there’s a bit of a conflict of interest there.

“When I approached him, my husband is highly anti-drug. He was like ‘not happening, anywhere’. I had to bring the science hard and heavy, with of course our son dying in front of us. It had to be really convincing,” she recalled. “We packed up everything. It’s very hard.”

Clark’s husband and other son stayed in Georgia. “We’re living in separate states. It’s what we have to do. Our older son actually said it. He looked at us, and he said, how can we not do it if we love him [Caden]? That became our mantra, our resounding call to Colorado,” Clark said.

Caden (right) and his brother, Jackson, who stayed in Georgia with their father. HB 885 is a bill currently pending in the state that would allow for medical cannabis to be administered to patients like Caden suffering from seizure disorders. Courtesy of the Clark Family.

An eighth-generation Georgian, she is bitter that her home state has not yet legalised medical cannabis and considers her and Caden to be “refugees”.

“My grandma taught me to grow vegetables and love God. I knew what county I’d raise my children in when I was 10 years old,” she said. “Do I feel disenfranchised and unwelcome [in Georgia]? Yes, you bet your ass I do,” she said.

“This is such a huge emotional screw. It’s a trauma. It’s just a huge gift and a trauma. Coming here and sort of ripping away, it was horrible and it was so hard,” Clark said.

Clark said eventually her family will run out of savings and will have to sell their house in Georgia in order to support a split household that is half living in Colorado.

Helping with the huge expenses involved in uprooting a family from one state to another are grassroots organisations like the Undergreen Railroad (a twist on the historic “Underground Railroad,” which during the 1800s helped slaves escape the U.S. South).

Another charity, Ride to Give, has raised 12,000 dollars for one family, the Coxes, who relocated from Georgia to Colorado to access medical cannabis for an ailing child, Haleigh, who also suffers from Lennox-Gastaut.

Nicole Mattison tells a similar story. “We moved in January from Tennessee to Colorado for our two-year-old daughter,” she told IPS.

“It’s been a bit of an undertaking, but so far it’s been well worth it,” she said. “Our daughter is diagnosed with intractable infantile spasms.”

Like other parents, Mattison had tried everything, including the starvation diet, which had the side effect of causing kidney failure in her daughter, Millie.

Mattison has been giving Millie THCA, with amazing results. “She’s been on it for six weeks now. We’ve seen a 75 to 90 percent decrease. She hasn’t had any infantile spasms.”

Mattison’s whole family made the move. “My husband owned a landscape company in Tennessee. We sold that to help fund the move. Currently, neither one of us have a job. It’s been really tough. We have two other children,” she said. “We left our church, our established support group.”

But Mattison does not regret her decision. “I would take the hardships any day for the possibility that Millie could one day have an improved quality of life.”