Some Virginia parents are making the heartbreaking decision to split up the family, so their sick child can get access to medical marijuana.
It may sound unorthodox, but these families say they are desperate and it's the only treatment making a difference.
Three little Virginia girls, Haley, Jennifer, and Lucy, share three different stories of families in the fight of their life. Haley is a curious 13-year-old, who shakes uncontrollably through the night. She had more than 800 major seizures last year alone.
"I'll get compliments, or when we go out in public they'll think, 'well you keep her nice' or 'she seems so happy.' Well, it's like, 'You don't see her in this state,'" said Lisa Smith, Haley's mother.
The Smith family lives in the Northern Neck. Haley started having seizures at 5-months-old. She has Dravet syndrome, a severe form of epilepsy with no clear treatment. Haley functions at the level of a 3 to 5-year-old. She's been through 21 different medications.
"These are life threatening seizures and one day one of them will take her life," said Smith.
Jennifer Collins, 14, has a different form of epilepsy, and she's been through 13 different drugs. Some of them aren't even approved by the Food and Drug Administration.
"We have no other options in terms of existing medications. One of them she's on now is clearly experimental," said Jennifer's father, Patrick Collins.
The side effects of her pharmaceutical drugs leave her fighting, "depression, suicidal thoughts, waking cognitive issues, anger, hair loss," said her mother, Beth Collins.
These symptoms from legally prescribed medication can be just as bad as her 300 seizures each day. She was falling behind in school.
"She's going to go one of two ways," her father said. "If we stick with where we are now, she'll never be the person that she could be."
The Collins' made the painful decision to split up the family. Patrick and his other daughter stayed behind in Fairfax. Beth and Jennifer moved 1,700 miles away to Colorado, where medical marijuana is legal.
"It was terrible. It was terrible," Patrick said, choking back tears.
"It's tough, It's tough, you know, and she wants to come home. She misses her dad," added Beth through tears.
Right now, 20 states and the District of Columbia have legalized medical marijuana.
The treatment has not been scientifically proven, no federal agencies support it and it's highly debated in the medical community. The THC in the plant is what makes you high, but there's also compounds called CBD and THCA. When the THC is removed, an oil is left behind. It's the oil that's placed under a child's tongue, much like you deliver Tylenol to a child.
"We're not advocating for legalization. We're not giving our child something that's making them high. It's not something you smoke," said Patrick.
"It's a benign oil from a plant that happens to have a bad reputation," said Beth.
Families in Colorado are seeing immediate results, though the research and studies are still a ways off. That's because marijuana is still considered a schedule 1 drug, so testing and research isn't allowed. It was only a few weeks ago that the FDA announced it would start testing the effects of medical marijuana on treating epilepsy.
Jennifer's been on THCA for two months and she's had a remarkable reduction in the number of her seizures.
"She is starting to score better on her math tests and other tests. She's telling us, 'I feel 90% better,'" said Beth.
Lisa Smith can't just pick and move to Colorado. Instead, she's hoping Virginia changes its law.
Right now, Virginia only allows for the possession of marijuana for medical purposes, but doctors can't write prescriptions because of the federal law. Virginia Delegate Bob Marshall has even tried to repeal what's in place. He told the Washington Post just last month, "To do these experiments on kids, in the absence of science, I question that."
But Virginia families like the Rhodens from Staunton say they don't have time to wait for the FDA or science to catch up.
"I have a very small window of time to protect my daughter's intellect. Right now, she is developing normally, right now," said Melissa Rhoden.
Her daughter, Lucy, is a happy two-and-a-half-year-old. In a video she's running around the living room playing, then just 10 minutes later she is lying on a bed, dazed, seizing, and being administered oxygen. This is her daily life. As any parent who has watched their own child suffer might understand, the Rhodens' hope is huge.
"I really can't afford to wait. None of us can afford to wait. We are three families, we represent more. We're Virginia's children," said Rhoden through tears.
Rep. Morgan Griffith (R-VA) introduced a bill a few days ago that would remove the federal obstacle to prescribing and possessing medical marijuana. He knows it's an uphill battle, but he said he had to ask the question, "Isn't it cruel to not allow real doctors, real drug companies, and real pharmacists to use marijuana for legitimate medical reasons for real patients?"
Thursday, July 24 2014 8:05 PM EDT2014-07-25 00:05:21 GMT
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