The friends and family of a little girl facing a huge battle are looking for the public’s support.
Charleigh’s Journey fundraiser will help raise money for three-year-old Charleigh Fales, who was diagnosed with a rare and terminal genetic disease called CLN-2 Batten Disease. The disease has an average survival rate of six to 12 years and causes symptoms such as visual impairment and seizures.
Charleigh will likely die young and lose almost all quality of life along the way.
As the family grapples with the knowledge that the time they have with their daughter may one day be cut short, they also have to take Charleigh to regular doctor visits, surgeries and procedures.
So close family friend Kim Hepp is organizing a fundraiser to “raise awareness for Batten disease and especially bring awareness to Charleigh” – the only child in B.C. known to have the condition.
Hepp said Charleigh’s mom Jori Fales is taking a leave of absence from her job as a dental assistant and dad Trevor Pollock is working sporadically to help the family get by.
“I really feel that the family, financially, could really use our support,” Hepp said. “Charleigh only has so much time. This is a terminal illness, so having the family spend as much time together as they can without having to worry financially is my goal.”
The “drinking and dancing” fundraising event will be held July 19 at 9 p.m. at the Capital Ballroom, which donated its facility and staff for the event. Local DJs and community members are also donating their time and resources so that 100 per cent of ticket proceeds go directly to Charleigh and her family.
“That’s one thing I really love about Victoria – especially when a child is involved – is we’re all so supportive and we rally around everybody, so I’m hoping for that type of support this evening,” Hepp said.
Tickets are $25 or $30 at the door of the Capital Ballroom, located at 858 Yates St.
“This fundraiser is so they can take a deep breath and not worry so much financially,” said Hepp. “Come out and support the family.”