At 17, Ava Turtle is thriving and studying for a T Level in Early Years, working part-time as a lifeguard, and mentoring younger peers. But just a few years ago, things looked very different.
Ava first joined the F.I.R.E. programme at Shine in 2022, during a time when she felt isolated and misunderstood. Living with Hydrocephalus; a condition that causes excess fluid to build up in the brain, Ava faced daily challenges that affected her memory, concentration, and energy levels. She also experienced physical symptoms like headaches and fatigue, which made school and social life more difficult.
“People didn’t understand what I was going through,” Ava explains. “I’d get tired really quickly, and sometimes I’d forget things or struggle to keep up. But instead of helping, people just assumed I wasn’t trying.”
Ava,
Shine
At school, Ava was bullied and excluded by peers. Staff often misunderstood her condition, and she was placed on a lower-level college course based on assumptions about her ability. “It made me feel really lonely,” she says. “I lost confidence in myself and didn’t know where to turn.”
Building confidence and preparing for adulthood
Shine is a UK charity supporting people with Spina Bifida and Hydrocephalus across England, Wales and Northern Ireland. Its specialist youth programme, F.I.R.E., which stands for Friendship, Independence, Resilience and Empowerment, was designed by and for young people with these conditions.
“I felt nervous about coming,” Ava says, “but I also felt confident because I knew I could connect with people who had similar experiences. It felt like a safe space where I could just be myself. Nobody labelled me. I was treated equally.”
Supported by youth worker Chris Greenhalgh, who also lives with one of the conditions supported by Shine, the programme helped Ava build confidence, understand her condition, and prepare for adulthood. She learned about alcohol safety, self-advocacy, and how to speak up in medical and educational settings.
“I started feeling confident asking questions about my future,” Ava says. “I understood Hydrocephalus better and could help others understand it too. I even asked about things like alcohol safety, because I didn’t know where else I could go to ask that.”
Ava also stepped into leadership and joined Shine’s youth panel to mentor younger members, and help deliver training to professionals. “It felt great to be trusted,” she says. “I was treated as an expert in lived experience. I got to speak to younger members who were nervous about starting high school. I wanted them to know they weren’t alone.”
Chris saw Ava’s transformation firsthand. “She went from being quiet and unsure to leading sessions and speaking at strategic planning meetings,” he says. “She even advocated for young people with other conditions. That showed real empathy and growth.”
Today, Ava is thriving in college and gaining hands-on experience in early years education. Her part-time lifeguard role has boosted her self-esteem, and she’s considering university and a career working with children or in fitness.
“Youth work gave me the support, confidence and community I needed,” Ava says. “I’ve found where I belong.”
Chris agrees. “Ava’s story shows the power of youth work, especially when it’s specialist and tailored. It’s not just about managing a condition. It’s about building resilience, confidence and a sense of belonging.”
