An 18th birthday is a milestone, but Lily Merritt never got to celebrate hers, losing her battle with mitochondrial disease after just eight short months. To mark this significant anniversary on 24th August, The Lily Foundation’s CEO and founder, Liz, her partner Dave and their two daughters, Katie and Rosie, have decided to run the London Landmarks Half Marathon together next April.
Much has changed since Lily passed away back in 2007, but the family recognise there is still a long way to go in raising funds for, and awareness of, a disease that so many people have still never heard of. So they’re taking on this charity challenge to help put mitochondrial disease on the map all the way along London’s most famous lanes and landmarks. You can do your bit by sponsoring them just £18 to spur them on to the finish line, or why not sign up to run yourself, or come along and cheer them on from the sidelines.
From cheer squad to running squad
It was while the family were cheering Team Lily on at this year’s London Landmarks that regular runner Dave suggested they should all take part next year. Everyone was quick to agree, but each will face their own individual challenge. For Dave, who already has 12 marathons under his belt, it’ll be about getting the rest of the family across the line. Katie, currently studying medicine at university, also runs already and will take her motivation from the doctors dedicated to improving the lives of those with mitochondrial disease.
The non-runners, Liz and Rosie, will need to dig deep. Although Rosie has already started following the couch to 5k training plan, she admits to being petrified by the thought of a half marathon, while Liz feels much the same. “It’s going to be a huge challenge for us!” she laughs. “But it felt appropriate that we should do something in Lily's memory as a family to celebrate her milestone birthday. We want to raise money to help find a cure for this very cruel and horrible disease, a disease that took away our baby girl who never even had the opportunity to celebrate her first birthday, let alone her 18th.”
The family, who felt so isolated and adrift when Lily was diagnosed with mitochondrial disease, are now the driving force behind a community that supports over 1300 patients and families all over the UK. They’ve lived through it themselves, so they’re uniquely placed to understand the devastating impact a mitochondrial disease diagnosis has.
Finding strength in Lily’s memory
“Lily’s given me the strength to be there for others,” Liz continues, “often at the most difficult times. I think about what we’ve created in Lily’s name, and the relationships I have with some of our patients and parents. Wherever they are on their mito journey, be it diagnosis time, a funeral, or any tough time, people understand that you’ve been there and you get it like no one else. That’s something special.”
The support The Lily Foundation offers to patients and families affected by mitochondrial disease has been fundamental to making the charity what it is today, but just as important is the continuing effort to raise awareness of, and fund research into, the disease. With recent advances, Liz is hopeful that one day soon a breakthrough may be made in finding effective treatments. In the meantime, work to spread the word must continue, so that those within the medical community have a better understanding of mito, and there can be a clearer pathway for patients once a diagnosis is reached.
That’s why the family are taking on such a high profile fundraiser – to give something back to all the incredible people they’ve met on their mito journey, and help the charity continue its mission to end the suffering caused by mitochondrial disease. Please help them to reach their target and complete their challenge.