15 years later, the charity has raised £8.5 million, and Liz's steadfast commitment to improving the lives of mitochondrial disease patients and their families has won her an MBE.
On Tuesday morning Liz attended a royal investiture ceremony at Windsor Castle, where she received her MBE from Princess Anne. Liz said the event felt 'extra special' as it coincided with the 15th anniversary of her daughter Lily's death from mitochondrial disease, and the setting up of The Lily Foundation in her memory.
Speaking after the ceremony, which was attended by Lily's dad, Dave, and the couple’s daughters Katie, 19, and Rosie, 17, Liz commented: "What an incredible experience it’s been receiving my MBE at Windsor Castle. From the minute we arrived we've been made to feel super-special, and everyone’s taken such great care to ensure our day has been a memorable one.
"We were guided through Windsor Castle to the King's Drawing Room, where we were briefed about the investiture ceremony. I was very privileged to be awarded my MBE by Princess Anne, who knew all about The Lily Foundation and the work we do, and congratulated us on all we've achieved so far to help people affected by mitochondrial disorders. It's been a truly humbling experience, and I hope everyone involved with our charity feels as proud as I do today. This honour is for all of us."
Liz was named as an MBE recipient in the 2021 Queen's Birthday Honours list after being nominated by several families who have been supported by The Lily Foundation. Clare Tranter, who lost her first child to mitochondrial disease, wrote: "We will always be so grateful to Liz and The Lily Foundation. The support we received from them has been life-changing. Without it, we may never have had the two healthy children we have today."
“An extraordinary woman”
Liz's nomination was also backed by top scientists in the field of mitochondrial disease. Prof Sir Doug Turnbull, formerly Director of the Wellcome Centre for Mitochondrial Research and one of the world's most respected mitochondrial disease experts, referred to Liz as "an extraordinary woman" who had "transformed the advice and support available for patients with mitochondrial disease in the UK".
Liz set up The Lily Foundation with her family in October 2007 after her eight-month-old daughter Lily died from mitochondrial disease, a rare genetic condition that has no cure and affects one baby born every day in the UK.
The Lily Foundation has since become the nation's leading mitochondrial disease charity, so far raising millions to support affected families and fund scientific research into the condition.
The charity was influential in lobbying for a change in the law in 2015 to allow mitochondrial donation (aka 'three-parent babies'), a pioneering IVF treatment that makes it possible for women with a mitochondrial disease diagnosis to have children without the disease.
In 2018, Peter Kay famously donated all profits from a special screening of Car Share to The Lily Foundation, sending visits to its website through the roof. Mitochondrial disease awareness received a further boost in 2020 after Liz advised ITV scriptwriters on a Coronation Street storyline about the condition.