[Editor’s Note: the link to Jayda’s GoFundMe page can be found here.]
We first wrote about Jayda, the little girl battling Vanishing White Matter (VWM) disease, back in July when she spoke at the Cannabis Life Conference in Vancouver. VWM is an extremely rare brain disease, and one of many different forms of leukodystrophy, that has only 300-400 known cases worldwide. There is no cure.
When we first met Jayda and her mom, they were fundraising at a lemonade stand outside the conference venue. They were raising funds to go to the United Leukodystrophy Foundation conference in Minnesota, which is a 26 hour drive away from where they live in Vancouver, BC. To make matters worse, their car was stolen just a few months before Jayda was diagnosed with Vanishing White Matter disease, and the family had been unable to replace it since.
Jayda and her mom were fundraising outside the conference at the suggestion of Jayda’s brother, a medicinal cannabis user himself. While Jayda has never consumed cannabis, her mother is open to it as a potential treatment option, but believes there still needs to be more research before she’s comfortable with Jayda using it.
Regardless, the cannabis community came together and showed support for this little girl, raising over $10,000- much better than the $60 they’d raised selling lemonade outside- which enabled them to attend the Leukodystrophy conference in Minnesota.
In the time since, her story has been slowly building and gaining traction, having recently being picked up by the Daily Mail UK.
Jayda seemed to be a completely normal and happy 9 year-old girl until a chance head-on collision in P.E. class triggered a 20 minute grand mal seizure. After being rushed to ICU, she was unconscious for three days, and upon gaining consciousness, she had to relearn how to walk and speak.
It was during her recovery from the seizure that she was diagnosed with Vanishing White Matter disease.
What is Vanishing White Matter Disease?
Vanishing White Matter disease is hereditary, progressive, and mostly affects children. There is no cure, which is terrifying because VWM disease destroys the insulation of nerve fibres, which affects the ability of nerve cells to ‘speak’ to each other.
Symptoms of VWM disease include swelling in the brain, balance and coordination problems, seizures, vision loss, and coma.