The opportunity to connect with others in similar situations and spend quality time together in a safe, supportive environment is clearly a huge pull when it comes to this very special weekend. Mums, dads, grandparents, little ones and their siblings travelled from all over the UK to be part of the event at The Chesford Grange Hotel in Kenilworth.
They were joined by an energetic team of Lily Foundation staff and volunteers plus a group of experts in mitochondrial medicine from Cambridge, London, Oxford and Newcastle, all generously giving up their time to provide everyone in attendance with support, advice and entertainment.
After dropping the youngsters off at Kids Club on Saturday morning, parents were free to focus on a full day of informative talks, group discussions and Q&A sessions with mitochondrial specialists, as well as sharing stories and connecting with fellow mums and dads.
After a welcome from The Lily Foundation CEO and founder, Liz, Research Manager Maria gave an update on everything that’s happening in the world of mitochondrial research. Dr Will Macken from UCL then spoke about our Precision Diagnostics Project before everyone broke into groups for sessions on a range of topics from understanding mito to living with the disease.
For parents who had lost a child to mitochondrial disease, counsellors from Child Bereavement UK were on hand to provide 1:1 support, and for the first time there was a wellbeing ‘sound bath’ session which proved popular for those seeking an alternative to the medical lectures.
Meanwhile at Kids Club, there was fun galore with a gaming bus and magic show plus various craft activities for the younger ones. The older kids had the opportunity to express themselves through street dance and graffiti art, which showcased a number of budding artists and performers.
The day was rounded off with a gala dinner followed by the customary disco, this year with a glow-in-the-dark theme. Many seized the opportunity to show off moves they’d learnt or t-shirts they’d painted during the day. Oh, and some of the adults were just as keen to get noticed.
The fun – and sun – continued on Sunday with a funfair, outdoor games and a petting zoo. This year these were accompanied by a research zone hosted by the medical teams from Cambridge and Newcastle filled with puzzles that put a playful spin on mitochondria.
The weekend concluded with a barbecue and the traditional parade to the beat of the drums before everyone said a fond farewell to new friends and old, heading home feeling exhausted, but with the knowledge that they’d been part of something very special.
One family new to the event commented afterwards: “We were apprehensive at first, but… we had the best, most emotional but exciting weekend ever and will never forget it.” Another parent said she’d had a “phenomenal weekend… meeting people going through the same experience. Made some friends for life!” Lily Foundation Board member Dean Booth, also attending for the first time, felt it was “a real privilege to see the difference everyone makes at a human level.”
And Natalie from the UCL medical team described how the event had given her plenty of food for thought. “I came away with ideas on how we as an adult service can help our patients around the time of giving diagnosis and the added support they may need in the days and weeks after we share the results,” she said. Clear proof that the weekend doesn’t just benefit our Lily families but opens the eyes of our medical colleagues too.
Huge thanks to everyone who pitched in to make this unique weekend a success, and to all those who made the journey to be there. Whilst this may have been our biggest and best Lily Family Support Weekend yet, we’ll keep pushing the boundaries to make next year better still! Because The Lily Foundation are here to improve the lives of every family affected by mitochondrial disease, and we know just what this weekend means to them.