The Lily Foundation
Nikki’s daughter Ruby was born perfectly healthy in 2021. However, at six months old, she developed severe anaemia – and five months later she was diagnosed with Pearson syndrome, a form of incurable mitochondrial disease.
Since that diagnosis, Nikki and her family have already raised an incredible £12,000 for mitochondrial disease charity The Lily Foundation to increase awareness of Ruby’s condition and help other families affected by the disease.
Nikki ran the London Marathon back in 2014, but she’s had three children since then so knows the demands will be different this year – even just carving out time for training from her busy schedule will be challenging. Although her training will be ad hoc and done whenever she can get outside, Nikki is a seasoned runner who loves to lace up her trainers. She can’t wait to experience the incredible atmosphere once again and knows the pull of taking part in this iconic event will be more than enough motivation.
Ruby won’t survive childhood because her organs don’t have the energy to work properly. At the moment, it’s mainly her bone marrow that’s impacted – but in the future, it will ultimately affect all her major organs. Regular blood transfusions for Ruby and the hope of the few years they still have together gives Nikki the drive to fundraise.
“I have an utter love of running and it really helps keep my mental health positive while trying to cope with Ruby’s tragic diagnosis,” explains Nikki.
She’ll be using her Enthuse fundraising page and Facebook to spread the word.