January 22nd 2015 was a brisk, cold day. All the trees in Richmond, Virginia were bare from a harsh winter. As the chill blew up the hill in the city’s historic Shockoe Slip district, several families began to emerge from a hotel in the shadow of the State Capitol.
Lisa Smith was there with her 14-year-old daughter, Haley. Beth and Patrick Collins were there too, accompanied by their 15-year-old daughter Jennifer. Later, they would be joined by Teresa Elder, her daughter Ashley, and Teresa’s 22-year-old son, Tommy.Haley, Jennifer and Tommy are desperately ill with extreme forms of epilepsy. They have illnesses so insidious they have stymied a virtual army of doctors and specialists. But these families believe that oils made from a cannabis plant might help their children where they say all other anti-epilepsy drugs have failed.
On that day, all of these families were in Richmond to attempt a task they had been told would be impossible: to try and convince the Virginia General Assembly to change a decades old law to allow the families access to those oils. It was the first step of a remarkable journey.
Lisa and Bobby Smith, their daughter Haley and twin sons, Parker and Peyton, live in Virginia’s Northern Neck, an idyllic spot on the Chesapeake Bay. As the sun rises over their house every morning, it paints with every moment a new hue in the sky. It’s easy to understand why this family — why any family — would want to live here. And when Lisa and Bobby welcomed Haley in August of 2000, it seemed to make their house a home.
At first, Lisa said, Haley was, “normal, happy, developmentally right on track.” But, she told NBC’s Harry Smith, “she was also my first child, so I could have had blinders on and didn’t see some of the signs that were there.”
Lisa says the first seizures came when Haley was five months old. As Haley got older, the mystery only deepened for the Smith family.
“She wasn’t diagnosed till she was seven,” Bobby Smith explained to Harry. “That was a true roller coaster. It was awful the first seven years ’cause we didn’t know what was wrong with her.”
Haley was eventually diagnosed with Dravet Syndrome, an extreme form of epilepsy, which is frequently fatal. The older Haley got, the more frequent and violent her seizures became. What the Smiths considered “normal” is unfathomable. By the time Haley was 12, Lisa Smith said her daughter was having 300 seizures a year.
“That was okay. You know 300 seizures a year was– it was okay… we can handle that.” Two years later, her parents say Haley was averaging 1,000 seizures a year, and anti-epilepsy drugs seemed to be having little effect.
Beth and Patrick Collins live in Fairfax, Virginia, just outside of Washington DC, with their daughters, Alexandria, 17, and Jennifer, 15. Jennifer’s seizures first started when she was about eight years old and to her parents seemed innocent enough: a fluttering of her eyes. Beth says she first noticed it around the dinner table, because as she said, “that’s when you’re face to face with your kid.”
But Beth and Patrick say that as Jennifer got older and began going through puberty, her condition worsened. Jennifer began to have grand mal seizures. Her father Patrick says the first time he witnessed one of these seizures, “I thought she was dying…she started turning blue, her eyes rolled back into her head, and her body contorted.”
“It’s just absolutely terrifying,” he added.
Eventually, Jennifer was diagnosed with Jeavons Syndrome and was prescribed strong anti-epilepsy drugs. Patrick and Beth worried about the side effects of the medications Jennifer was taking. Beth says her daughter suffered “…every side effect to every medication that was on every label.” Her parents say one drug caused a rash so severe, Jennifer had to be rushed to the emergency room.
Harry Smith asked the Collins’s if they felt like they were losing their daughter.
“We felt like we were losing our entire family,” answered Patrick. Continue reading story here…