A South Everett mother is on a crusade to make medical marijuana more accessible to children.
She says without the drug she would have buried her daughter three years ago.
Maddie Holt's room inside the Holt family apartment looks like most children's rooms—a bed full of toys, a wall full of art, and a rocking chair.
But her rocking chair's purpose is deliberately disguised by a giant stuffed Minnie Mouse.
"You can never be OK with losing your children," Maddie's mother, Meagan Holt, told us as she sat in the chair where she planned to lose her daughter, rocking her to sleep for the very last time.
“Maddie has Zellweger Syndrome which is terminal. Most children don’t survive past their first year of life," Meagan explained.
Yet, on Nov. 1, Maddie reached a milestone -- 5 years old.
And Meagan says the only reason she’s still here is because of marijuana.
"Kids like Maddie are the reason you have to deschedule cannabis," Meagan told us.
Maddie was born 12 weeks premature, legally deaf and blind but doing well all things considered—until two months after her second birthday when she had her first seizure.
“That was the first time Maddie stopped breathing and I had to call 911 and she seized for two hours, and from that day every single day she had a seizure and if we weren’t already in the hospital I was calling 911 every single day giving her CPR and just screaming into the phone for someone to please come help," Meagan remembers, wiping away tears.
At one point Maddie was on 26 different pharmaceuticals, most of which Meagan says she couldn't pronounce.
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“I didn’t know what most of them were, I was just like 'give her the kitchen sink, I don’t care what you have to do-- save her life.'”
Instead the Holts were advised to make plans for Maddie’s death; they signed a hospice care plan at Seattle Children’s Hospital.
Meagan was desperate for another solution though so she began researching online and cannabis kept popping up. Meagan says she thought the drug would give Maddie some relief; she never expected it would change everything.
After giving her a combination of CBD and THC, Maddie went nine weeks seizure free. Now she gets 90 milligrams of CBD and 40 milligrams of THC in her feeding tube every day, and just recently Meagan has started using the full marijuana plant to stop a seizure before it starts.
These results are not surprising at all to Dr. Selena Eon. She’s a naturopath who says more and more she is connecting families with what’s often called the last resort—and, she says-- it works.
“I’ve definitely seen cases where that child has been seizure-free for several months and if you go from having 10 or more seizures per day to having a seizure every couple of months that’s a significant decrease in neurological damage.
Most families are ecstatic at that kind of an outcome," Dr. Eon explained when we sat down with her inside her Bellevue office.
She says -- maybe surprisingly -- her patients don’t keep the treatment a secret from their other doctors.
“I welcome them to call me but so far none of the neuros have. I tell the families to give them my business card," she told us.
Meagan has been completely transparent with Maddie’s doctors at Seattle Children’s Hospital. She livestreams most of their visits on Maddie’s Facebook page.
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In one of her recent videos Meagan showed viewers Maddie’s care plan written on the whiteboard inside her room; it reads "mom administers cannabis."
Children's is a federally funded hospital -- and marijuana is a federally illegal drug. The doctors and nurses there don't administer it, and while it’s in Maddie's care plan, it’s not in her chart.
“I never have to prove myself to any of her doctors," Megan said. But she is trying to prove herself to the Washington State Legislature -- and lawmakers appear to be listening.
Last year she successfully lobbied for Senate Bill 5131 which in part makes it legal to share cannabis products as long as no money is exchanged.
Maddie's marijuana is donated so before Senate Bill 5131 passed Meagan was committing a felony.
She also helped write House Bill 1060 or Maddie's Law which would allow kids to take medicinal marijuana at school. Just like most hospitals, schools are federally funded and cannabis products are prohibited.
Maddie's Law passed the House last year, and the bill sponsors tell us they'll keep working on it until it passes the Senate.
"Something we’ve seen a lot is 'keep cannabis away from children,' and I just have to say please don’t -- because it saved her life," Meagan concluded.