Marathon a month mum from Worksop on a mission to raise cash after daughter’s rare diagnosis

Sarah Bell’s ambitious attempt is driven by her four-year-old daughter Emi who was given the life changing diagnosis of Tuberous Sclerosis Complex (TSC) when she was just four months old.

The rare condition that affects around one in every 15,000 people in the UK causes Emi to have up to 100 seizures a day.

Speaking about the diagnosis Sarah said: “She was on my knee, trying to stand when she had her first seizure. As a new mum this was the most terrifying thing I had ever seen. An ambulance ride, admittance to hospital and a chaotic 24 hours followed - EEG, MRI and many neurological tests were done and we were told she had Tuberous Sclerosis Complex. She had tubers (growths) in her brain and heart, and our lives had changed forever.”

TSC causes growths to develop in different organs of the body, such as the brain, eyes, heart and skin. Common problems from TSC can include epilepsy, autism, learning difficulties and kidney problems.

Sarah added: “Tuberous Sclerosis Complex has impacted us all. Last year Emi was having up to 100 seizures a day, her sister Hattie who is two years younger, has had to help us with seizure management from an early age - she helps us pack hospital bags, and looks after her sister when she's having a bad day. Both girls are also helping towards fundraising - they have been joining me for shorter runs, and cycling with me for mid-length runs. Both girls will be joining me at the end of at least one of my marathons.”

Sarah’s charity challenge for the Tuberous Sclerosis Association (TSA) has started well, with her planned marathons for January and February already completed, following routes around nearby Wallingwells and Woodsets.

Sarah caught the running bug after running the London Marathon in 2017 for the TSA – a charity close to her family.

She said: “We wanted to fundraise for the TSA to raise awareness and support for other people like Emi. The TSA has had a big impact on supporting us over the years, so we wanted to give something back.

"There will be ups and downs in my journey, but the bravery of Emi and other individuals and families who face this condition will keep me going – especially during these chilly months!

"I ran the London Marathon in 2017 for the TSA, and since then got the running bug. I thought running another marathon wouldn't stand out - I wanted to make the challenge really tough to make people take notice, so I decided one marathon every month for a whole year would be hard to ignore, as well as providing me with an epic physical and mental challenge. I ran London Marathon dressed as 'Batmummy' at Emi's request - I will be wearing additional bits of my Batmummy Costume during each marathon - Emi is obsessed with superheroes, Batman is her favourite!”

Emi is currently studying for her SATS and her health is improving.

Sarah said: “Emi is having a great year - she is almost 12 month seizure free and getting ready for SATS and secondary school and looking forward to some regional competitions in taekwondo.”

All the money raised by Sarah will go to the TSA, a charity that helps fund groundbreaking research into TSC, offers a free support line to the TSC community and aims to one day find a cure for the condition.

Luke Langlands (TSA Joint Chief Executive) commented: “The TSA works tirelessly for everyone in the TSC community. If we’re to continue to be here for those who rely on us, it’s only thanks to amazing people like Sarah, who push themselves to raise funds or kindly donate. We’re so thankful to Sarah and will be cheering her on with every single step of her journey!”

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