Girl suffering from seizures doing better after move to Colorado to live with other ‘marijuana refugees’

Emelyse Schmidt, 3, is shown on Saturday, March 5, 2016 in Denver. The Schmidt family moved to Colorado from Lawrence as a last resort so Emelyse could try hemp oil as a medication for her seizure conditions.

After just a few days in Colorado, a 3-year-old girl and her family are doing much better — even though they technically don’t have a home right now.

Valkyrie and Mitch Schmidt, of Lawrence, uprooted their lives last week to move to Colorado Springs, Colo., in hopes that medicinal marijuana could save their daughter’s life.

Emelyse Schmidt, 3, suffers from several serious health conditions including two seizure disorders — epileptic encephalopathy and Lennox-Gastaut syndrome — and bronchopulmonary dysplasia. She weighed just 14.8 ounces when she was born and has endured a wide range of medical misfortunes in her short lifetime.

In January, Emelyse’s tonsils were removed — a surgery that her parents thought would be a relatively simple overnight visit. But it resulted in a nearly three-week stay at Children’s Mercy Hospital in Kansas City, Mo., during which Emelyse slept almost constantly, suffered more seizure activity and began to develop pancreatitis because of one of her seizure medications.

Doctors sent the family home on Feb. 9, instructing her parents to make her comfortable.

“They sent us home telling us, ‘There’s nothing we’re doing here that you can’t do at home,'” Mitch said on Feb. 14.

Emelyse Schmidt, 3, is shown Sunday, March 6, 2016 in Colorado Springs, Colo., her new home. Pikes Peak is visible in the background. The Schmidt family moved to Colorado from Lawrence as a last resort so Emelyse could try hemp oil as a medication for her seizure conditions.

With no more alternatives, the Schmidts focused on their last hope: Emelyse’s primary neurologist had told them he believed her seizure conditions made her a good candidate for cannabis oil.

With help from Meg Heriford, owner of Ladybird Diner, the family managed to raise enough money to get a moving truck, pack up and head west across the state line, where Emelyse could legally be treated with medicinal marijuana.

So far, it looks as though it was worth it.

“Emelyse has been doing really well, actually. … Today, all day she’s been very happy, very energetic,” Valkyrie said Saturday.

Emelyse has started on small doses of a hemp oil called Haleigh’s Hope, based on the recommendation of many other patient families and the resources they’ve compiled from their experience.

They also visited Cohen Medical Centers in Denver so doctors could sign off on Emelyse’s medical marijuana card and certify her parents as caregivers. Valkyrie said doctors immediately recognized that Emelyse needed the treatment and said they would do what they could to expedite the process.

Emelyse Schmidt, 3, is shown playing at Laugh Out Loud Family Zone, 1000 Massachusetts St., in October 2015. Her mother, Valkyrie Schmidt, said Emelyse is not

“It was very cool and very validating having doctors be so upfront about it,” Valkyrie said.

Emelyse has had a couple of seizures since the move, Valkyrie said, but fortunately her new medicine has helped with that as well.

“We’ve given her a rescue dose of the medical marijuana in her mouth and it’s stopped her seizures, so it’s already proving effective,” Valkyrie said.

In the past, Emelyse has been prescribed a medication called Diastat, a gel suppository form of diazepam — also known as valium — that is administered rectally. However, Valkyrie said they don’t know if it is actually effective in bringing Emelyse out of seizures because anytime they’ve given it to her, the pain from the dose “shakes her out of it.”

“This is definitely much more positive — and in my opinion, safe — evidence showing that it is effective and that it is working for her,” Valkyrie said.

In the meantime, the Schmidts are looking to resolve their home situation.

At first, Valkyrie said, the move was going smoothly. But upon a walkthrough of the apartment they were planning to rent, they discovered roaches — everywhere.

“So we’re kind of in a mad dash to find a place now,” she said.

Fortunately for the Schmidts, a mother who has been in a very similar situation has opened her home to them. Jennie Stormes, whose son Jackson Stormes suffers from a type of epilepsy called Dravet syndrome, has taken the family in for now. She has also introduced them to a number of other families who have relocated from homes all over the country for the same reason the Schmidts did.

Emelyse Schmidt, 3, of Lawrence, is shown being

These fellow “marijuana refugee” families have been great resources, Valkyrie said.

“It’s really nice because we’re not the first generation of people coming here who just kind of pioneered it,” she said. “We’re definitely getting a lot of evidence and information from them as far as what we should do and things we can try.”

Their new friends have also helped soften the blow of leaving everything behind.

“Even though we’re experiencing a lot of homesickness, and a lot of missing our family and friends, we’re definitely getting situated in terms of community, and we really feel the love here, almost as much as we did in Lawrence,” Valkyrie said.

There’s one more real struggle: So far, Valkyrie and Mitch concurred, they can’t find food as good as what’s available in downtown Lawrence. The mountain views help to compensate a bit, but Lawrence was truly home.

“We would’ve stayed if this (treatment for Emelyse) was legal,” Mitch said.

Valkyrie said she hopes Kansas laws will someday change to allow medicinal marijuana. She would love to be able to move back.

“Even if Kansas doesn’t get it together but this still works for (Emelyse) and she’s happy here, then we’re happy,” Valkyrie said. “It’s all about her.”

And the family will be forever grateful to everyone who donated to help them embark on this mission.

“We can’t express our gratitude enough to everyone in Lawrence and everywhere else who have gotten together to help save our baby,” Valkyrie said. “It means literally the world, everything, to us. … I know we’ve got a lot of people praying for her, and that means a lot.”