Around 60 families from all around the UK attended the two-day event at Chesford Grange, Warwickshire. They were supported by a friendly team of Lily Foundation staff and volunteers, along with experts in mitochondrial disease from the UK's highly specialised rare disease centres in London, Oxford, Newcastle, Cambridge and Glasgow.
Informative talks, group discussions and Q&A sessions with mitochondrial disease specialists took place throughout the day, giving patients and their families a chance to share experiences and have questions answered. Talks covered a range of topics such as child loss and coping with a mitochondrial disease diagnosis, as well as up-to-date information about different types of mitochondrial disease.
Two counsellors from Child Bereavement UK were also on hand to provide support for those who had lost children to mitochondrial disease, with sessions available to individuals and couples.
Youngsters were kept entertained with storytelling, songs, puppeteering and arts and crafts, while older children enjoyed outdoor activities such as camp building, nerf battles and archery. The weekend culminated with the customary children's parade, featuring fancy dress and drumming and led by a giant 'Iron Giant' puppet.
Liz Curtis, CEO and co-founder of The Lily Foundation, said she could sense how much people had missed the weekend during the COVID-19 pandemic. "The atmosphere this year was really special, it was amazing to have everyone back together again, and to welcome some new faces too," she said. "Everyone was really open and honest about what they were going through. For many families affected by mitochondrial disease, there's nowhere else you can really do that."
Kerrie Vella, attending with her husband Sean and their daughters Piper and Phoebe, who has mitochondrial disease, said: "The Lily weekend is a lifeline to us, a chance to feel normal amongst friends. Not just friends, these people have become family. We will never be able to thank The Lily Foundation enough for making this happen and letting us be part of it."
Her words were echoed by Lisa Leggett, who lost her two-year-old daughter, Lacey, to mitochondrial disease in 2014. "We adore our Lily family, the one place where we can just be us! We are understood and listened to here. As a mum to an angel I take so much comfort from the support and guidance I get from the Lily weekend."
John Symons, a member of The Lily Foundation's Board of Directors, who has attended several Family Support Weekends, commented: "This year's event was bigger, better and more heart-warming than ever, and so well organised too. The pain these families are going through is unimaginable, so for them to have this kind of support, and not be isolated, is incredible. You've got world-leading doctors there, the very best in their field, getting involved and helping out, everyone working together. This is The Lily Foundation at its best, it's what this charity is all about."
There was glowing feedback from the mitochondrial specialists who attended too. Professor Kostas Tokatlidis, Head of Mitochondrial Biology at the University of Glasgow, said: "The weekend was a truly amazing experience. It was heart-warming to see the dedication and professionalism of The Lily Foundation staff, and humbling to engage with the families that face the devastating consequences of these incurable conditions in their everyday life. I was captivated by the dignity and camaraderie of these families, and their very positive and optimistic community spirit. Sharing research, and taking an interdisciplinary, mitochondria-centric approach, gives us hope for finding interventions to restore mitochondrial dysfunctions that affect millions, and eventually find a cure for mitochondrial diseases."
Huge thanks to everyone who helped make the weekend happen, and to all who made the journey to be there. The families we support are the heart of our charity – without them we could not do the work we do.
Sending much Lily love and strength to Mona, Masoud and Melika on the passing of their brave mito warrior Melissa, who very sadly lost her battle on the weekend of the event. Always in our hearts. x x x