Feel-good Friday: Cannabis conference attendees raise $7,000 for girl with rare neurological disease

There are just 200 documented cases of vanishing white matter disease, and Jayda is one of them

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A young girl with a rare neurological disease has been given renewed hope for the future, thanks to a generous group of cannabis enthusiasts at last week’s Cannabis Life Conference

Emcee Craig Ex, host of the weekly Expert Joints webcast, had just finished introducing the 3 p.m. speaker when he stepped outside for a break and was introduced to the budding entrepreneur by an exhibitor from the conference.

“He told me, ‘There’s a girl named Jayda selling lemonade on the seawall, and she’s trying to raise funds because she has a brain disease,’ ” he told the Straight by phone.

“Then I started thinking, ‘I’ve got a room full of people with money, and a microphone,’ and the wheels started turning.”

Ex learned from her mother, Linda, that Jayda was suffering from vanishing white matter (VWM) disease, a terminal, recessive neurological condition that affects just 200 people worldwide.

Triggered one year ago when Jayda was knocked unconscious in gym class and suffered a 20-minute grand mal seizure, the rare condition causes atrophy, ataxia, and epilepsy. A bump on the head or a fall could result in paralysis, loss of motor function, and even blindness.

“It basically means her brain is all but disintegrating. The life expectancy is about two to 10 years,” Ex explained.

After the accident, Jayda fell into a coma and was put on life support before being moved into intensive care. Three days later, she came to—but it took three months for her to learn how to walk and talk again.

According to Ex, Jayda and her mother attended the conference at the advice of a brother of Jayda's, a cannabis consumer who thought they might be able to make a few contacts in the medical-cannabis industry and, at the very least, "sell some lemonade to stoners".

“It was so totally serendipitous that the next speaker, Tracy Ryan, was speaking about a mother’s journey for cannabis in children,” said Ex. Ryan is the founder of California-based CannaKids, a cooperative that specializes in treating pediatric cancers, epilepsy, and autism with cannabis.

Then Ex brough Jayda and her mom on-stage in front of a room full of conference goers, and while he helped tell their story, a cup was passed around to collect donations for Jayda’s lemonade stand. She had initially hoped to raise $200.

In that time, medical consultants stood up one by one and offered to help Jayda, whose single mother is raising three other children and had recently started a GoFundMe account in hopes of raising funds to take Jayda to a medical-marijuana conference in Minnesota.

Video courtesy Cannabis Life Network

Linda had also hoped to raise enough money to buy a new vehicle to travel to the conference, because Jayda’s condition makes it difficult to fly. Mould issues and lack of air conditioning in her vehicle aggravated Jayda’s condition, and they’d been relying on public transit to get Jayda to her medical appointments. 

“David Hutchinson, Dave Hepburn, Mara Gordon, Tracy Ryan, and Nettie Green all offered her all the consultations and all the support she needs, and then Green Island Naturals stepped in and offered her all the products she and her mom might need, because mom’s got some pretty crazy anxiety, too,” Ex said.

By the time donations had been counted, a total of $1,600 had been raised.

Then three organizations—The Medical Cannabis Dispensary (owned by activist Dana Larsen), Topleaf Canada, and conference organizer Cambridge House International—stepped up to match the donations, bringing the total to $6,400. Dory Dempster of the Medical Cannabis Dispensary also assured Linda that they would help her find the right vehicle.

“Within the course of an hour, she went from $200 to $6,400, with all the products and consultations she needs, plus the commitment to make sure they get a car—and the GoFundMe account has gone up by $400,” Ex said.

With $7,000 of Linda’s $10,000 goal raised, she felt pretty overwhelmed by the generosity of the cannabis community.

"For the first time, I feel there is hope and that someone has listened," Linda told conference organizers as quoted in a release.

Ex said he felt proud to watch the cannabis community come together, and he said he hoped they could do even more for others who suffer from the rare disease.

"The idea is not only to help them get to their $10,000 goal, and a car, and products that maybe help improve her life, but that it also trickles down to some of the other 200 people with the disease," he said.

Jayda, who had sold lemonade before for other causes, told Ex her goal was to raise $2.6 million for VWM. 

Watch more about Jayda's story in the video above, courtesy the Cannabis Life Network.

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