A breath of fresh air for young adults with mitochondrial disease
12 young people with mitochondrial disease, along with family members and carers, attended the two-day event at Calvert Lakes, a centre that specialises in outdoor adventures for people with disabilities.
Members of the Lily team, including the charity's co-founder and CEO, Liz Curtis, were on hand to ensure the weekend went smoothly. Continuing the 'patient engagement' focus of Lily Family Weekends, they were supported by a six-person team from the Wellcome Centre for Mitochondrial Research (WCMR) at Newcastle University, including specialist consultants and nurses, a physiotherapist and the WCMR Patient and Public Engagement Manager.
Additional support and funding was provided by Christine and Pete Beal from My Mito Mission, a charity set up after their daughter Emma died from mitochondrial disease in 2017.
The guests enjoyed a range of fun and stimulating activities, including cycling, horse riding and hill treks. One of the highlights of the weekend was a 'high ropes course' that featured a daring zip-wire experience. The Calvert Trust provided specialist equipment and friendly, expert staff to help make the activities safe and accessible to all.
The Lily team organised evening activities and games, including a quiz night and a 'night at the races'. Both evenings were well attended and surprisingly competitive!
Feedback from those taking part was overwhelmingly positive, with many attendees posting messages of thanks on social media afterwards.
"It was a simply brilliant weekend," wrote Lyn Seaby, who attended the event with husband Paul and their daughter Olivia, who has mitochondrial disease. "The location and facilities were perfect, and the Calvert Trust team were fantastic. This weekend helped Olivia in ways you will never know. She thoroughly enjoyed herself, and enjoyed being challenged. She also made new friends, as did we. This weekend also gave parents a chance to chat and feel supported, instead of feeling isolated."
It was a brilliant weekend, spent with amazing people. I was facing new challenges head on."Samantha Josey, a young adult with mitochondrial disease who attended the weekend, said:
"It was a brilliant weekend, spent with amazing people. I was facing new challenges head on. It was an absolute pleasure to meet everyone, it felt like I’d known them for so long. It really is like one big family. Thank you all so much for making the weekend so special. We can’t wait until the next one!"
Dr Lyndsey Butterworth, who is part of the Newcastle team and also acts as a research liaison for the WCMR and The Lily Foundation, said:
"We were delighted to have the opportunity to spend the weekend with such an inspiring group of young adults. It was fantastic to see people outside of the clinic, having fun and doing things they wouldn't normally get to do. There was a positive atmosphere throughout the whole weekend, and it was wonderful to see everyone sharing their experiences and supporting one another. We can confidently say that the first Lily Foundation Support Weekend was a great success, and we are very proud to have been part of it."
Our very grateful thanks to our partners the Wellcome Centre for Mitochondrial Research and My Mito Mission for helping to make this event possible.