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Fighting mito,
finding hope.

Lily Young Adult Weekend 2022


26 October 2022

Young people with mitochondrial disease enjoyed an action packed trip to the Lake District when The Lily Foundation hosted its second annual Young Adult Weekend.

A group of young adult mito patients outdoors wearing hard hats and harnesses The driveway and sign leading up to the Calvert Trust near Keswick, Cumbria Three people sitting outside with cups in their hands, toasting to the camera A beautiful sunset over the lake and hill from the Calvert Trust building Two young adult mito patients toasting marshmallows around a campfire Young adult mito patients crossing a treetop trek at the Calvert Trust A group of people wearing protective headgear and harnesses in front of a climbing wall Three young people laughing and clapping together A man harnessed into a large swing smiling with his hands raised in the air Three people in helmets and harnesses, one attached to a rope on a climbing wall Three people outside with their faces painted black and their arms around one another A mito patient in a wheelchair gather sticks in the forest, accompanied by a man Two ladies with cycle helmets on laughing and riding recumbent bikes

Sixteen young adults and their carers spent two adventure-filled days at Calvert Trust Activity Centre near Keswick, in the heart of the Lake District. Glorious autumn sunshine added to the holiday feel as the group engaged in a range of activities including cycling, bushcraft, rock climbing, high ropes, zip wire and a giant indoor swing. 

The fun continued into the evenings, with  a hotly contested quiz on the Friday and a lively race night on Saturday. A newly refurbished water centre was also available for guests to enjoy, complete with a light and projector system to enhance the pool experience.

The Calvert Trust specialises in making outdoor activities accessible to all, and as usual the centre's in-house team went above and beyond to provide expert, friendly support.

Guests were also supported throughout the weekend by Lily staff, complemented by specialists from Newcastle and Oxford NHS Rare Mitochondrial Disorders service. The NHS team included Physiotherapist Jane Newman, Nurse Specialist Alex Bright and Research Nurse Isabel Barrow (Newcastle), and Nurse Specialist Sue West (Oxford). Sue was accompanied by her son Isaac, who volunteered to support the young people in their activities.

Lily staff member Janet Wilson commented: "These weekends are the perfect opportunity for young people affected by mitochondrial disease to come together with others living with the condition. They get the opportunity to challenge and support each other in different ways, and quality time to relax and get to know each other better at mealtimes and during the social activities. This is the case not only for the young people with mitochondrial disorders who we support, but also their carers, who are often family members, who also benefit from these weekends."

Guest Danielle, 34, who was recently diagnosed with mitochondrial disease, said: "I enjoyed meeting everyone involved with The Lily Foundation in real life. It was amazing to feel like I finally belong. It still feels very surreal that I have been given the opportunity to attend this event, it's something I will remember  forever."

Valerie Hill, who attended with her daughter Emily, 23, who has mitochondrial disease, said: "For me the best thing about this event is being able to talk with other patients and their families, and people who just 'get it'. Also the activities give you the self confidence to try new things outside of our comfort zone."

Big thank you to everyone who helped make this event possible, including Lily's Auntie Mandy who helped out as a volunteer, and our photographer Jason from Fyrefly Studios, who captured some of the many wonderful moments that made the weekend so special.

Watch our highlights video of the weekend!

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