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Dale lives in the UK and was diagnosed with Ring Chromosome 20 Epilepsy Syndrome – (r(20)) as a child. At the time very little was known about the condition and he and his family faced years of uncertainty. Here, Dale shares his journey through school, the difficulties of growing up with r(20), and how he discovered a passion for fundraising — most recently through a brave head shave to raise awareness and support for others living with the condition.
Early years and diagnosis:
When Dale first began experiencing seizures, doctors could only describe it as ‘epilepsy’. He was referred to several major hospitals, including Great Ormond Street and Oxford, but no one could explain why his seizures were so unusual.
Eventually, Dale received the diagnosis of r(20); but at that time there was no charity, no community and very few answers.
Not one doctor I saw had treated another r20 patient. At first, no one knew why my seizures were so different, and everything felt like trial and error.
My mum, stepdad and sister have been the most important encouragement in my life. They’ve given me patience and support when I needed it most.
Building resilience
The support of his family has been central to Dale’s journey. With encouragement from his mum, stepdad and sister, Dale continued to pursue his interests and education. He explored college courses in catering, health and social care, psychology and even built his own YouTube channel, where he taught himself how to play the guitar.
Over time he has found a new way to connect, through football, comic conventions and eventually through Ring20 Research and Support (Ring20)where he gained the confidence and drive to help others.
Dale’s fundraising:
Dale’s passion for fundraising began when his mum organised her own fundraising event. Inspired, Dale became involved and not only realised his passion for raising money but also for bringing people together.
My mum did a fundraiser, and I enjoyed it so much.
From then, fundraising became something I loved — raising money and putting on a good show.
Most recently, Dale took on a fundraising challenge shaving his head to raise awareness and funds for Ring 20 Research and Support UK – a bold act of solidarity that will inspire many.
Looking ahead:
Today, Dale is determined to use his experiences to reassure others with r(20) that they are not alone. He is a Trustee at Ring20 and a Ring20 Champion directly engaging with families around the world. Recently Dale has set up his own Facebook and YouTube channels, where he continues to find creative ways to raise awareness and connect with others.
We are incredibly grateful to Dale for sharing his story and for his dedication to Ring20. His courage and positivity shine a light on the importance of community and support for families living with r(20).
I want people to know they’re not alone — there are others out there facing the same challenges.
That’s why I fundraise: to give back and to bring hope.
If you’d like to support Ring20, you can donate here:
