Lily Grace Broadbent was born on 28th December 2021 after a normal pregnancy weighing a healthy 7lb 9, during her first 12 months, Lily reached all her milestones with no concerns, Lily enjoyed swimming, playing with her big sister and cousins, attending playgroups and was always happy and smiling, shortly after celebrating her 1st birthday, Lily was stood up proudly walking across the front room with her walker, life couldn’t get any better!

Sunday 8th January 2023, began like any other Sunday, but our lives would change forever. Lily woke up around 8am, and was soon lay in bed with mummy & daddy watching morning tele. Around lunch time after Lily had woken up from a midday nap, Joanne noticed Lily's coordination wasn't right when she was crawling and her right arm had started to twitch. 

We immediately rushed Lily to hospital and the worst period of our lives followed, Lily was transferred to Alder Hey Children’s hospital where she spent the next 6 weeks, 10 days in intensive care on a ventilator and a further 4 and a half weeks on the neurology ward. 

Lily underwent several examinations, blood tests, EEG, CT & MRI scans, before our worst fears were confirmed. In February 2023, our beautiful daughter was diagnosed with Mitochondrial disease, (Aplers Syndrome POLG). 

Before Lily’s diagnosis, we’d never heard of Mitochondrial disease, nor could we ever be prepared for the devastating impact it would have on our little girl and family. 

Despite the many challenges Lily now faces in day to day life, Lily continues to be an absolute joy and a pleasure to be around, Mitochondrial disease has cruelly taken away most of Lily's abilities, but it hasn’t stopped her beautiful smile and infectious laugh. 

There is no cure for Alpers Syndrome and Lily’s prognosis isn’t good, it’s a debilitating, life limiting condition. Rather than looking forward to the future, our focus is now on living in the moment and trying to enjoy every precious moment we spend together as a family. 

Lily is my inspiration to run the 26.2 miles of the London marathon to help raise money for the Lily foundation, a charity that is committed to supporting families that face this devastating disease. 

I can’t finish this story without thanking all our family, friends and colleagues for their amazing support during what has been a devastating time, and a special mention for Joanne, Lily’s mummy, we love you very much for everything you do for Lily and our family 💕

SOME INFORMATION ON THE LILY FOUNDATION: 

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.Did you know every day in the UK a baby is born who will develop Mitochondrial Disease! There is no cure for this disease which is for many, debilitating and life limiting. Please stand with us and fight Mitochondrial Disease and fight for hope.I am running 26.2 miles ...... please donate if you can.