Faced with a life-altering diagnosis for her child, an area mom is gathering support for life-saving research one step at a time.
June 17th is CDKL5 Awareness Day, and a Collingwood-area mom will be hiking the Georgian Trail that day to draw attention to the cause and hopefully raise $12,000.
Natalie Ladly’s daughter Brynn, five, has CDKL5 deficiency disorder. Ladly and her husband live in Heathcoate with Brynn and their two other children.
“My cousin in England actually inspired me. He did a walk for Alzheimer’s, as he lost his dad to Alzheimer’s, and he walked for 24 hours,” said Ladly. “I’m not doing a 24-hour walk, but I’m doing it with Brynn. I’m hoping it will catch people’s attention and they’ll want to be part of it.”
CDKL5 deficiency disorder is a rare developmental seizure disorder caused by mutations in the CDKL5 gene, and can manifest in a broad range of symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function.
“Brynn is fully dependant on us for all aspects of her daily living,” said Ladly. “For us, we also have two other children, and COVID has made it really challenging because there’s no break from the caring. It’s been heavy, but the CDKL5 community and this community in general has been supportive and made it possible to manage.”
In an effort to make this year’s fundraiser more COVID-friendly, Ladly decided to gather pledges to hike the 34-kilometre Georgian Trail with Brynn, calling the fundraiser Trail of Hope.
“Usually we run a fundraising walk in June, but with COVID-19, we haven’t been able to do that,” said Ladly. “Our plan is to start at 6 a.m. and I hope we get to Meaford by 6 p.m.”
Ladly expects the trek will be challenging with Brynn, as she will have to stop whenever Brynn has a seizure, needs to be fed or have a diaper change. Interested walkers are welcome to join the mother/daughter duo for sections of the trail while maintaining social distance.
“They could also cheer us on at the different access points, or just make donations,” she said. “Hopefully we can bring the community together when it’s really difficult to physically be together.”
Ladly is one of eight parents on the board of CDKL5 Canada. The non-profit offers support to families with a child with a CDKL5 diagnosis, and raises money to invest in research toward finding a cure. She will also be selling T-shirts in support of the cause.
Donations to CDKL5 Canada can be made here.