Ellie was diagnosed with a rare form of mitochondrial disease when she was two years old, a couple of days before Christmas 2022. After months of tests and investigations into why she wasn’t growing or meeting milestones, we finally had an answer, just not one we wanted. Ellie’s particular genetic variant is so rare that nobody can tell us exactly what lies ahead. Instead, we’ve learned to take things one day at a time and celebrate every milestone she reaches.

Over the last few years, Ellie has spent more time in hospitals than any child should. She also has regular appointments at Alder Hey Children’s Hospital and travels to Newcastle to see the specialist mitochondrial team. She lives with kidney problems, an unsafe swallow and fatigue, alongside her spina bifida and hydrocephalus. But if you met her, those probably wouldn’t be the first things you’d notice.

You’d meet a happy, cheeky little girl with the biggest smile, who loves making people laugh and getting up to mischief. She continues to surprise us with just how determined and resilient she is.

The Lily Foundation has become such an important part of our lives. The support, advice and friendship they’ve given us has been invaluable, and the Lily Family Weekend is something we all look forward to every year. Ellie loves spending time with other children living with mitochondrial disease, and for us it’s a chance to learn from experts, meet other families who truly understand, and be reminded that we’re not facing this journey alone. We’re incredibly proud to be fundraising for the Lily Foundation!