They were joined by an enthusiastic team of Lily staff and medical professionals at Calvert Lakes near Keswick, a centre specialising in outdoor adventures for people with disabilities. And neither signal failure on the trains nor motorway delays could deter any of our determined attendees.
The travel chaos meant a delayed dinner for many but after checking in and refuelling, everyone made their way to the games room for an emotional mix of reunions and introductions, before splitting into teams for a rather competitive quiz organised by the Lily events team. Congratulations to the ‘Avanti Survivors’ who took the victory crown – literally – and commiserations to team ‘Simple Minds’ who came last but not least and gamely sported their booby-prize stick-on moustaches.
I’ve had the time of my life… So many precious memories that will last a lifetime. Indescribably grateful to Liz and the team for the privilege of being able to join such a special event with so many special people…” – Danielle, 35, mito patient
Saturday dawned bright and breezy, and after a hearty breakfast it was time for the first physical challenge of the weekend. Sessions ranged from zip wires, high ropes and a wheelchair challenge course to rock climbing, bushcraft, cycling or spending time with ponies at the stables.
Thanks to specialist equipment and the brilliant team at the Calvert Trust, all the activities on offer are safe and accessible for all. And it was clear that everyone had a fantastic time discovering new skills and overcoming old fears, returning to the centre for lunch excited, hungry and exhausted in equal measure.
In the afternoon there was a chance to slow down whilst brushing up on painting skills at an art therapy class, with more than a few budding artists unleashing their potential. The water babies in the group were able to enjoy the fantastic facilities at the centre, which boasts a multi-sensory hydrotherapy pool, spa, bubble pads and water fountain. Oh, and stunning views out to the Lake District scenery beyond.
After dinner it was back to the games room, this time for a lego challenge that proved harder than it looked, followed by a disco. The award for best dancer must go to Jaeden, who also managed to coax everyone onto the dance floor for a thoroughly enjoyable boogie. And a big shoutout to Tim’s acoustic guitar session that kept the night owls entertained and rounded off a memorable night.
Massive thank you to all the team for organising a brilliant weekend! Highlight was seeing Mum do the zip wire. It was lovely to meet everyone. I don’t feel alone anymore thanks to the Lily family.” – Bal, 31, mito patient
It was an adventure-packed Sunday morning with another accessible outdoor activity. Lunch followed, then a flurry of fond farewells as everyone departed, their heads filled with magical memories and newly found self-belief. What a wonderful weekend – a chance for all involved to step outside of their comfort zone, and for new acquaintances to become old friends.
Oxford Clinical Nurse Specialist Sue, who helped out during the weekend, was almost lost for words about its impact. “I can’t explain how great it is!” she said. “I gain so much insight into how these patients live day-to-day. I attended last year too, and there were a few quiet, reserved patients who this year came out shining with confidence. We all gain an awful lot from the weekend and grow as professionals in spending 3 days living alongside mitochondrial disease. It’s a privilege to be included.”
A huge thank you to everyone who helped make the weekend such a success – all the staff at Calvert Lakes; the clinicians and researchers – Catherine and Isabel from the Newcastle mitochondrial team, Will and Adelina from London and Sue and Heather from Oxford; Claire who provided the art therapy session; DJ Mark; videographer Jason from Fyrefly Studios and photographer Paul who both captured the magic of the weekend so perfectly.