When Mandy Vine’s son Matthew was diagnosed with the rare brain condition Leukoencephalopathy with Calcifications and Cysts (LCC) nearly eight years ago, her life changed overnight. The disorder causes abnormal calcium deposits, cysts, and white matter damage, leading to seizures, mobility issues, and potentially life-threatening brain pressure. 

Thanks to a connection between her son’s hospital and Professor Yanick Crow, a leading LCC researcher at the University of Edinburgh, Matthew received a rapid diagnosis and began treatment with an experimental cancer drug, stabilising his condition for over four years. Mandy dedicated herself to raising awareness and supporting research, determined to help other families facing this little-known disease. 

In 2017, she launched a JustGiving page for Professor Crow’s work, which grew into a sustained fundraising effort. Since 2017, Mandy has raised nearly £42,000 through creative events including half marathons (once in kilts during lockdown), quiz nights, plant sales, coffee mornings, and designing calendars and Christmas cards. “It’s not millions, and it won’t fund a clinical trial tomorrow,” she says, “but it’s about raising awareness, connecting families, and helping researchers keep going.” 

Professor Crow acknowledges Mandy’s impact: “She’s made a real difference, not just for Matthew, but for others facing this diagnosis.” 

Today, Matthew is a young adult with a job he enjoys and a passion for boccia, a Paralympic sport, while Mandy, now a qualified boccia referee, travels across the UK supporting him. For her, fundraising is about more than money, it’s about building a network, providing encouragement, and pushing progress in a space often overlooked. 

Interest in LCC is growing across Europe, with early discussions about including it in broader rare disease networks such as the European Reference Networks (ERNs). For now, Mandy focuses on supporting her son, connecting with families, and maintaining momentum for the research team she believes in. “If sharing our story and raising money helps move the science forward, then it’s all worth it,” she says. 

To support Mandy’s campaign and learn more about LCC, visit her fundraising page: https://www.justgiving.com/fundraising/mandytanner 

Mandy Vine’s Mission to Support Groundbreaking Research into Her Son Matthew’s Rare Brain Disease / Your Impact by is licensed under a