When Bailee set himself the goal of completing 13 challenges before his 13th birthday, he knew he wanted each one to mean something. He wanted a balance of fun and challenge – but also wanted to make a difference. Alongside the challenges, Bailee committed to raising money for Young Epilepsy—a cause that is personal to him following his own diagnosis. So far, he has raised an incredible £772, and he’s still going.
One of the challenges Bailee chose was volunteering. From the beginning, he was clear that he didn’t just want to give his time—he wanted to be part of something meaningful to him and something that could genuinely improve the lives of other young people.
After some research, we came across a youth epilepsy advocacy group that immediately stood out. It offered exactly what Bailee had been looking for: a chance to have his voice heard and to contribute to work that supports and represents young people with epilepsy.
I felt like I was the only one who had epilepsy before…I feel connected.
Before getting started, Bailee attended a very supportive introductory meeting. During this session, everything was clearly explained—the purpose of the project, the opportunities available, and how young people can get involved. It gave Bailee the confidence to step forward and take part.
Since then, he has been attending monthly advocacy sessions, where he joins other young people to discuss important topics, share ideas, and provide feedback on projects aimed at improving services and raising awareness. Being asked to share his thoughts and opinions on real work has been a huge highlight—it has shown him that his experiences matter and that his voice can help shape change.
Most importantly, Bailee has found the experience both empowering and enjoyable. It has given him a sense of purpose and connection, and he’s proud to be contributing.
This is just the beginning. He is now looking forward to continuing his involvement with the group and is keen to carry on volunteering and remain an active part of the Epilepsy 12 Youth Advocates with RCPCH & Us.
I really like being part of the group because I get to help make things better for other people with epilepsy.
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