From Diagnosis to Determination: Kirsty and Daniel’s Mission to Give Back

At YBTC, we’re continually inspired by the courage and generosity of the families we support. When Kirsty Benson and Daniel Davison’s son Reggie was diagnosed with a brain tumour at just four years old, their lives changed in an instant. But out of their family’s most difficult days came an incredible drive to help others, raise vital awareness, and give back to the charities and hospital teams who cared for them.

This summer, the couple raised an amazing £2,500 for Yorkshire’s Brain Tumour Charity and £2,500 for the Neuro Ward at Leeds General Infirmary (LGI)!

Life Before Diagnosis

Before Reggie’s diagnosis, life for the family of four was busy, fun and full of everyday moments. “In our family, there's myself, my partner Dan, Rio who is Reggie's big brother … and Reggie who is five,” says Kirsty. “Before diagnosis, [we were] just normal, typical family. We both worked [at the time], and the kids obviously attended school… We like to go out on family walks as well, in the countryside and camping and just normal, typical family stuff.”

The boys shared a love of football, gaming, walks, and weekend adventures - the everyday joys of childhood that truly matter.

Inspired by Care, Driven to Give Back

Reggie during his treatment at the Neuro Ward at Leeds General Infirmary

Following surgery, Reggie spent five weeks on the Neuro Ward at LGI while recovering from his treatment for medulloblastoma which left Reggie with posterior fossa syndrome (PFS).

Kirsty recalls how the nursing team went above and beyond. “We had absolutely incredible care from the nurses… I can't tell you how amazing they were,” she says. “It wasn’t just the typical stuff - they went above and beyond for our family, such as advocating for Reggie, arguing with doctors to get him what he needed, and providing myself with reassurance.”

But during their stay, Kirsty and Dan noticed how under-resourced the ward was. “We just thought, ‘Do you know what? We're going to provide [these important items]! We're going to fundraise for them so they can get what they need.’”

Alongside supporting the ward, they also resolved to support a charity that directly helps families affected by brain tumours. “We wanted to choose a charity that was local, but also did the things that we care about most: research and helping families,” Kirsty explains. “Because it doesn't matter what age you are when you are diagnosed with a brain tumour, it's devastating.” That shared purpose led them to YBTC. “We found Yorkshire’s Brain Tumour Charity, and we chose you guys. I think you do amazing work and you also have links to the L52 ward at the LGI, too!”

How Archie’s Story Helped Reggie

Before Reggie was diagnosed, Kirsty noticed early signs - vomiting, headaches, and balance issues - but they were subtle and easy to miss. It was hearing the story of Archie, a local boy who had been diagnosed with a brain tumour, that gave her the knowledge and confidence to act. She remembered their description of how Archie was walking, "[almost like they were drunk] and I saw that in Reggie,” Kirsty explains. “As soon as I saw that, I took a video and I took him to the GP, and that's the moment that got us heard and [the doctors finally] listened to him.”

Archie’s legacy lived on through Archie’s Caravan, which provided Reggie and his family with holiday experiences during his treatment. “I just felt like they saved Reggie’s life, because they did so much awareness [raising], and that’s why I carry on doing what I do on TikTok,” Kirsty says. “If I can help one more family out there, that would feel like I’ve done a good thing - that’s my life work.”

Fundraising with Heart and Purpose

The couple’s first fundraiser was simple but meaningful: Dan asked people to donate instead

The nurses from the Neuro Ward, along with Dan and Kirsty, take on the Yorkshire Three Peaks Challenge!

of buying him a birthday present. “We raised around £3000 for Ward 52 last year,” says Kirsty. Encouraged by that success, they aimed higher this year with the Yorkshire Three Peaks Challenge, targeting £5,000 to split between YBTC and the ward.

“It was originally when Dan said that he wants to raise £5000 this year, I was like ‘there's no way we're going to be able to do that,’ but you know, true to his word, we did it,” Kirsty smiles.

“It just gave us such satisfaction to be able to give that money to both YBTC and Ward 52 knowing that it's going to make a difference… when you've been through something so horrific, these little moments of joy push you on to do bigger and better things.”

The Power of Advocacy and Awareness

Kirsty’s journey into advocacy was closely tied to others in the local brain tumour community who had shared their experiences openly. “I just felt like they saved Reggie’s life, because they did so much awareness [raising], and that’s why I carry on doing what I do on TikTok,” she says. “If I can help one more family out there, that would feel like I’ve done a good thing - that’s my life work.”

She’s become a vocal advocate for early recognition of brain tumour symptoms, helping families recognise signs and demand proper medical attention.

TikTok: A Platform for Awareness, Connection, and Hope

Kirsty’s TikTok account (@braintumourrecovery) has grown into a powerful voice in the brain tumour community. With over 25,000 followers and almost 990,900 likes, it serves as both a storytelling platform and a source of support for many.

When she began, she was cautious: “I know I didn't want to feel like I was putting [Reggie] out on the Internet for just views,” she says. “That wasn't my intention, and I didn't want to exploit him.” Instead, her aim was clear: “I want to get the awareness out there and I want to get our story out there… why shouldn't people see what these kids go through and open their eyes?”

Over time, her content has evolved to document Reggie’s recovery from posterior fossa syndrome and share the journey of rehabilitation. She tracks milestones, posts about therapies, and offers insights into the daily life of a child recovering from a brain injury. “Considering Reggie couldn’t walk, talk or eat, he’s now independently at school full time!” she shares.

Her transparency - from setbacks to successes - resonates deeply with families around the world. “It’s opened the doors to a community of other parents… Having that support and people to chat to and even people to give hope - that makes me feel amazing inside,” Kirsty says.

Through TikTok, people are not only hearing her story, but also connecting, empathising, and finding encouragement to push forward.

Kirsty and Dan visited YBTC's Fundraiser, Fi to deliver the good news of their fundraising efforts!

Continuing to Make a Difference

For Kirsty and Dan, this is just the beginning. “Every year we will be doing something to raise money for you both,” Kirsty says. “The inspiration just comes from being in that situation, but then also getting that incredibly empowering feeling - thinking, ‘we're actually making some difference.’”

Their hard work, compassion, and honesty have touched lives both in hospitals and across the digital world. We at YBTC are honoured to have them as part of our community.

A Final Word

Kirsty and Dan’s story stands as a testament to resilience, hope, and the strength of community. From hospital wards to TikTok’s global stage, they’ve proven that love, advocacy, and determination can spark real change. Their commitment is helping create a future where no one faces a brain tumour diagnosis alone - and their voices continue to shine a light for families everywhere.

If you’ve been moved by Kirsty, Dan, and Reggie’s journey and want to support families like theirs, you can:

💜 Donate: www.yorksbtc.org.uk/Donate

💜 Fundraise: Take on your own challenge - visit www.yorksbtc.org.uk/event-list

💜 Raise awareness: Follow us and share messages about brain tumour symptoms and stories of hope.