Rare Disease Report

Lemons into Lemonade: Jayda's Leukodystrophy Story

JULY 16, 2017
James Radke
A little strategic marketing by a girl with a rare neurological disease has helped her raise 8 times what she initially expected.
The girl is named Jayda, and she has leukoencephalopathy with vanishing white matter.
The fundraiser was a lemonade stand to support the GoFundMe she started to provide money for expenses (equipment and renovations) to keep her safe. She conducted her new business outside a medical marijuana conference.
According to a news report, Jayda’s brother learned about the Cannabis Life Conference and suggested to his mother that, should they attend the conference, they might be able to make a few contacts in the medical-cannabis industry. At the very least, they could "sell some lemonade to stoners."
Leukoencephalopathy with vanishing white matter is a progressive neurodegenerative disease in which the myelin sheath along axons deteriorate. Early symptoms may include ataxia, spasticity, seizures, and optic atrophy, but they can vary greatly with each patient. Treatment for it is supportive and may include physical therapy and rehabilitation for motor dysfunction (mainly spasticity and ataxia) and anti-seizure medications for seizures.
Jayda’s condition began last year when she hit her head, and began to have grand mal seizures and ended up being in a coma for several days. Since then, thanks to rehabilitation, she has learned to speak and walk again but the disease is progressive with no treatment available except supportive care.
The coordinators of the conference in Vancouver, Canada heard about a girl outside their hotel with a rare neurological condition, and asked her to come in to share her story. The emcee, Craig Ex, introduced Jayda and her mother to the crowd and passed around a collection cup.
The day began with the mother and daughter hoping to raise $200 selling lemonade. The duo left the conference with $1600. Later, 3 other organizations (The Medical Cannabis Dispensary Topleaf Canada, and Cambridge House International) matched the donations, bringing the total to $6,400.

It is hoped that some of the funds being raised will allow the family to buy a vehicle to help transport Jayda to other medical conferences.

Watch Jayda's story in the video below, courtesy the Cannabis Life Network.

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