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Last year, Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease. Here Millie explains why getting a confirmed diagnosis for Otto was so significant. It’s stories like theirs that make The Lily Foundation determined to change things.

In 2024, 80% of patients do not have a genetic diagnosis for mitochondrial disease, and that’s simply not good enough. Without one, there is no chance of finding a cure, being offered treatment or simply being accepted on a clinical trial. And, possibly the hardest thing of all for some, reproductive options are severely limited.

Help us to support families like Millie and Tony, and improve the lives of everyone affected by mitochondrial disease.

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.

That’s why The Lily Foundation exists.

Watch PhD student Bal’s story about her mitochondrial disease diagnosis, and how The Lily Foundation helped to give her a voice.

Here’s Bill Nighy to explain in a little more detail what mitochondrial disease is.

Mitochondrial diseases are rare genetic disorders. Our cells contain structures called mitochondria, often described as the ‘batteries’ of our cells, which create the energy needed for our bodies to function.

In people with mitochondrial disease, these ‘batteries’ don’t work properly, causing energy shortages that can impact almost any part of the body, including the brain, heart, muscles and digestive system.

Mitochondrial disease is a complex and difficult-to-diagnose condition. Symptoms vary widely from person to person, but often lead to severe physical and developmental challenges. There is currently no cure.

So little is known about mitochondrial disease.

With your help, The Lily Foundation can keep funding research that will one day find a cure.

With your help, we can keep raising awareness of mitochondrial disease, and keep supporting those who are living with the disease every day.

Please donate what you can to help us keep fighting mitochondrial disease and finding hope for all those affected by this incurable condition.

We hear from mito parents Kerry and Sid about their experiences of attending The Lily Foundation Family Support Weekend in 2022.

This event is designed especially for families affected by mitochondrial disease. Their child may have received a diagnosis for the condition, or have suspected mito but with no confirmed diagnosis. Or they may have lost a child or children to mitochondrial disease.