“Every mile is for Connie,” said Ellen Richardson as she prepares to take on the London Marathon 2026 to raise awareness of a rare genetic condition affecting her young daughter.
Ellen, from Blackburn, is fundraising for the Tuberous Sclerosis Association after her daughter Connie was diagnosed with Tuberous Sclerosis Complex at just two-and-a-half years old.
In early 2024, the family’s lives changed overnight when Connie suddenly began having seizures, leading to weeks of hospital stays, tests and uncertainty before doctors were able to confirm the diagnosis.
TSC is a rare and incurable condition that causes tumours to grow in vital organs including the brain, heart, kidneys, and lungs.
In Connie’s case, she has multiple tumours on her brain, resulting in complex and active epilepsy.
Despite everything she has faced, Connie continues to bring joy to those around her.
Ellen said: “She’s only four years old, but she’s already been through more than most adults ever will. Despite everything, she is the funniest, bravest little girl. She’s cheeky, kind, completely full of personality and loves a good boogie - she keeps us laughing every single day and reminds us what really matters.”
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Ellen added: “Living with TSC is incredibly unpredictable. It means constant monitoring, regular scans, medication, and navigating a future that is full of unknowns. There is currently no cure.”
She described the support of the charity as vital: “The Tuberous Sclerosis Association has been a lifeline for us. They are the only UK charity dedicated to supporting people affected by TSC - funding research into treatments, providing guidance and helping families like ours feel less alone during incredibly difficult times.”
Taking on the marathon has turned a personal goal into something far more meaningful.
Ellen said: “If I can do something this hard for one day, it’s nothing compared to what Connie faces every day.
“She’s the bravest little girl I know - this is all for her.”
Training has been a challenge while balancing work, home life and caring for Connie, but Ellen says the motivation has never wavered.
She added: “If sharing our story helps even one family feel less alone, then it’s worth every step.”
To donate, visit here.
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