Liz wins The National Lottery Local Health Hero award

“I’m pretty speechless to be honest,” she said after being presented with her trophy by Paralympian swimmer Ellie Simmonds and broadcaster Vernon Kay at The Sun Who Cares Wins Awards in London. “It was very humbling to be with some of the most amazing people who work to help others every single day.

“To be chosen as the winner of the National Lottery Local Health Hero Award is simply fantastic as I can’t imagine how many other amazing projects were in the pool of potential winners.”

Liz, 49, knows more than most about helping others. Since losing her 8-month old daughter Lily to mitochondrial disease in 2007, she has devoted her life to raising awareness of the life-limiting genetic condition.

The Lily Foundation, set up the same year Lily died, now supports more than 1200 families affected by a disease which prevents the body’s cells from producing enough energy. The Foundation funds research and has helped make a cutting-edge gene-testing available to families who get a diagnosis.

Liz, from Warlingham, Surrey, was awarded an MBE in 2021 for her services to people with mitochondrial disease.

Acknowledging her team at the Lily Foundation, Liz said, “Their passion and dedication is fundamental to the success of the project and I know that I would not be receiving awards such as this if they were not alongside me.”

It was the heartbreak of losing Lily that drove Liz to help others affected by the condition. She said, “I didn’t speak to any other family who had a child with mitochondrial disease while Lily was alive. I knew there were other people out there because the doctor told me. But there was no way of contacting them. It felt isolating and nobody had heard of it.”

When Liz searched online for more information she mostly found medical research papers or reports in journals. There seemed to be very little information written in straightforward, easy-to-understand language. Given the devastating impact of the disease on families, the lack of practical, accessible information was hard to fathom.

Liz said, “Most people have still never heard of mitochondrial disease, but it turns your world upside down. You start a grieving process because you know whatever happens it’s not going to be the future you planned. It’s devastating.

One of the things parents find really hard to grasp is not knowing. You’re told there’s no treatment and no cure and your child will die, but they can’t say if it will be in a week, a month, a year or six years. It’s like living with a time bomb. Every little sniff or cold you think is the beginning of the end.”

For adult sufferers, the progression may be slower, but still comes with no timeline.

Liz, who has two older daughters with her partner Dave, has achieved extraordinary things since setting up the foundation in 2007. Her first priority was diagnostics and she set out to raise £400,000 for a gene-testing programme.

In 2014, the Lily Foundation launched the Lily Exome Sequencing programme. Liz said, “Previously, parents of children with ‘mito’, or those who had lost a child to the illness, had to wait months, or even years, to learn the genetic pathway of the disease in their family. By vastly reducing that time, Lily Exome Sequencing helped families make informed decisions about clinical care and future reproductive options.”

The Lily Foundation provided this pioneering service until 2020, when it became part of routine NHS testing.

Liz readily agrees the incredible achievements of the Lily Foundation are a powerful legacy for her baby daughter. And she isn’t the only member of the family who’s been inspired by the tragedy. Liz’s oldest daughter Katie is studying medicine at Bristol University, in part because of her late sister’s story.

Supporting others continues to be an important part of the Lily Foundation’s work. Recently, Liz and her team were in Warwick talking to 65 families with children affected by mitochondrial disease.

She said, “Our residential weekends are like coming to a wedding without the dramas. You’re surrounded by people you love, who love and accept you.”

You can watch the Who Cares Wins award ceremony here.

27th September 2023