The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Celebrating 15 years of... Lily friendship


30 March 2023

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. And that’s why The Lily Foundation have been bringing people together for the last 15 years.

A large group of adults and children in front of a large lorry with a Lily logo

Back in 2007, when Liz lost her baby daughter Lily to mito, she found very little in the way of support and specialist knowledge, and those feelings of loss and isolation were fundamental to the creation of our charity and why it exists today. One of our key objectives has always been to provide ongoing support to patients, their families and carers, connecting people and fostering relationships, and here are just some of the ways we’re doing this...

Lily Family Weekend

A collage of poloroid photos. 4 containing pictures of children smiling having fun, one is a group of adults in sitting in a circle listening to a man at the front talking and one of a lady stood at a lectern smiling into a microphone.

“The Lily Weekend is a lifeline to us, a chance to feel normal amongst friends. Not just friends, these people have become family”

It's been described as 'special', 'wonderful', 'brilliant', even 'life changing'. One thing's for sure, this residential weekend is one of the most popular events in our Lily calendar. It's a unique opportunity for families to get together and relax in a safe, caring environment, and includes social activities, informative talks and workshops from the UK's top mitochondrial doctors for the adults plus plenty of fun activities to keep little ones of all ages entertained.

Young Adult Weekend

A man stands between two women. All three are dressed in outdoor clothes to keep them warm. They also have black make up stripes across their cheeks. The are all smiling into the camera

“It was amazing to feel like I finally belong... this event is something I will remember forever”

What better way for young people living with mito than to come together for two days in the heart of the Lake District, with the chance to enjoy outdoor activities in a safe, disability-friendly environment. As well as challenging and supporting one another, they enjoy quality time to socialise and get to know each other over the course of the weekend. This annual event doesn't just benefit the youngsters either – accompanying carers and parents also love the sense of togetherness.

Patient Information Days

A woman stands at the front of a large room holding a pieve of paper and a microphone. Behind her is a large screen, on it are 10 pictures of different people. In front of her sat around tables are people looking at the lady at the front of the room

“Although I have lived with the condition for years I learnt so much key knowledge”

We work in partnership with specialist mitochondrial clinics in Newcastle, Oxford and London to co-host a number of Patient Information Days throughout the year. These occasions offer an informal atmosphere where visitors can socialise, share stories and receive support and information from a variety of medical professionals.

Facebook groups

A hand is holding a smart phone. On it is a picture of a facebook page called The Lily Adult Mito Support Group with a picture of a group of people all sitting on chairs facing the same way looking in the same direction

“Sending love and strength ❤️ you’ll find comfort in this group for sure xxx”

Most of us are active on social media these days, so it made sense for us to extend that to our mito family. We have a private Facebook group for families whose children are affected by the disease, and another for affected adults, and each provides a place for people to connect with others who understand their situation, share information and experiences, and hopefully make some lasting friendships.

Virtual coffee mornings

15 pictures in 4 rows of adults all looking forward and smiling on a zoom call

“Not many people understand what mitochondrial disease is so it’s so nice to be able to chat to people who understand and may be experiencing similar. It makes me feel less alone”

Everyone enjoys a cuppa and a natter with friends – and that's no different for mito sufferers. Patients may be scattered all across the country, but it's easy for them to come together over Zoom for these informal weekly meetings. They're a great way to help people with mito feel less isolated and better informed about their condition.

Just need someone to talk to?

two women sitting on chairs facing each other deep in conversation. One is wearing a Lily Foundation t-shirt

“The whole Lily team have changed my life for the better”

It's important to remember that everyone is affected differently by mito, and every person living with the condition faces their own unique challenges. But help is available. Whether it's a specific question, a reassuring chat with someone or some emotional support, we’re here to listen. It can be really hard to make that first step and ask for help, but no one has to face mito alone. 

In 2007 we started with just one family. Today there are over 1000 people who consider themselves part of the Lily community. Why not become part of it too, and help us to ensure that no one affected by mito today feels as alone as Liz did all those years ago.

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