Back in 2007, when Liz lost her baby daughter Lily to mitochondrial disease, 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
“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
“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 a mitochondrial disease diagnosis 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
“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
“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 mitochondrial disease, and another for affected adults. 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
“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 mitochondrial disease 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 a mitochondrial disease diagnosis feel less isolated and better informed about their condition.
Just need someone to talk to?
“The whole Lily team have changed my life for the better”
It's important to remember that everyone is affected differently by mitochondrial disease, 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 mitochondrial disease today feels as alone as Liz did all those years ago.