Running for Terry: Freya’s Marathon in Memory of Her Grandad

Freya is preparing to take on the Rob Burrow Leeds Marathon in memory of her beloved grandad, Terry Priestley, who sadly passed away in November 2025 after living with a rare form of motor neurone disease (MND) known as Primary Lateral Sclerosis for more than 25 years.

Reflecting on her childhood, Freya says her grandad “played a huge part in my upbringing from a young age and has always been by my side throughout my life.” Their relationship was built on countless happy memories – from holidays abroad and caravan trips to frequent visits to St Ann’s, moments that Freya will always treasure.

Family was always Terry’s priority. He particularly loved watching his grandchildren grow up and took great pride in being there to support them, no matter what stage of life they were at.

In his younger years, Terry was an accomplished sportsman who excelled in everything he turned his hand to. He was a passionate golfer, achieving a single‑figure handicap he was immensely proud of. He also played football and cricket at a high level, winning numerous trophies along the way – a reflection of his determination and love of sport.

When faced with his MND diagnosis, Freya says her grandad met it with “fortitude, resilience and a positive attitude – never once asking, ‘why me?’” As his condition progressed and his physical abilities declined, Terry refused to let the illness define him. Instead, he found joy in other pursuits, such as reading, doing crosswords, and watching sport on television.

Freya speaks warmly of the special bond they shared. “He was the person I went to with all my problems – he always knew how to make everything better again,” she says. She fondly remembers their serious Rummikub games, walking through the door to see his smile, knocking on the wall between their bedrooms to say goodnight, and laughing together – even rolling their eyes at grandma when she was “being a dumbo.”

“He is my inspiration and my role model,” Freya says. “He was always positive, kind and caring. Even when he was really unwell, he thought about us – his family – rather than himself. That sums up my grandad. I’ll love and miss him forever.”

Freya is now continuing Terry’s legacy alongside her grandma, who has already raised an incredible £25,000 for the MND Association through garden parties and other fundraising activities. Together, they are determined to keep supporting the charity.

By taking on the Rob Burrow Leeds Marathon, Freya hopes to raise further awareness and funds for the MND Association – turning her grief into something positive and honouring the strength, love and resilience her grandad showed throughout his life.