Meet our CACNA1A Ambassador for the UK:
Gareth Belsey
Gareth lives in London, UK, and is the proud uncle of two-year-old Norah, who was diagnosed with CACNA1A in November 2024.
Norah was first diagnosed with global developmental delay, prompting Gareth’s sister and her husband to consult a neurologist to explore possible underlying causes. Initial tests were inconclusive, so the family pursued genetic sequencing, which ultimately revealed a de novo CACNA1A variant.
“Our family’s journey with CACNA1A has been deeply emotional and filled with uncertainties,” Gareth shares. “Yet through it all, Norah has shown extraordinary strength and resilience.” With the love and support of her devoted parents, her granny, extended family, and local specialists, Norah has made remarkable developmental progress in recent months.
Although she isn’t walking yet, Norah is making strides—literally—with the help of daily physiotherapy, her new walker, and parallel support bars. She astonishes everyone with her speedy bum-shuffling and her fierce determination to explore the world in her own way and at her own pace. Every milestone, big or small, is celebrated with joy.
“Norah is the most joyful, mischievous, and loving little girl—full of determination and spirit. Her courage inspires us every day.”
Gareth hopes that by establishing a support group for UK-based families, and by sharing experiences, families can feel more connected and supported as they navigate the unique challenges of CACNA1A together.