For Zaria and Anastacia Chirkoff, recent fundraising efforts created an opportunity to increase their quality of life.
A look of disbelief flashed across father Victor and mother Catherine’s faces when Crystal Leese with the North Okanagan Community Life Society presented them with the cheque for $7,045, which was raised at the second annual NOCLS 24 Hour Fun Run May 25.
“People are very generous. We’re very grateful,” Victor said inside his Vernon home. “Sometimes, when people donate, they might not see results. I don’t even know how to put into words how grateful we are.”
Funds raised from the event will be put towards the $16,000 cost of a lift to allow the girls to access their swim spa, which was donated to the family in 2016 through a Children’s Wish Foundation Canada initiative.
“When you see them in there and they’re having a good day, the laughter, it touches your heart,” Catherine said.
Anastacia, who is now 10-years-old, and Zaria, eight, were both born with a rare condition called pontocerebellar hypoplasia type 2, which impacts the development of the brain.
Symptoms vary from case to case but may include microcephaly, a condition where the head is smaller than normal; developmental delays with little voluntary motor skills, intellectual disability and several severe movement disorders. Approximately half of those diagnosed suffer seizures.
Both girls spend 90 per cent of their day in their chairs. Their muscles ache and they are unable to speak, stand or sit without support. The other 10 per cent of their day is spent on a matted floor.
“When they’re in that pool, they’re weightless,” Catherine said. “They can just be kids.”
Prior to receiving the swim spa, the girls would visit the Vernon Recreation Centre pool twice per week. However, their condition amplifies sensitivity to loud noises and their bodies struggle to regulate temperature. In their swim spa at home, everything is under control.
In the swim spa, the girls don a neck ring flotation device and enjoy the warm, soothing water.
“It takes so much pressure off their body,” Catherine said. “It helps us give our girls quality of life.”
Unfortunately, Victor and Catherine said, kids grow. Before they could simply lift the girls into the pool manually, but they’re now in need of assistance to utilize the home facility.
With the lift, the girls will be able to resume frequent visits to the swim spa, which have been weaved into their homeschooling program.
“It’s nice when you can hear their laughter and see their smiles,” Catherine said.
And it wouldn’t have been possible without help from the community, the Chirkoffs said.
“When we did Make a Wish, I was mind-blown by the generosity of the community,” Victor said. “It allows the kids to be included in the community.”