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Fighting mito,
finding hope.

Wild horses couldn’t keep us away from the Lily Family Weekend!


27 July 2023

End-of-term traffic jams, train strikes, unseasonal weather and wild horses couldn’t stop around 60 mito families from coming together with medical experts, Lily staff and volunteers for this year’s highly anticipated Family Weekend.

A lady in a Lily-branded t-shirt bends down to hug a small girl, with other family members standing around Two children, a girl and a boy, in wheelchairs are laughing and exclaiming together. Both are wearing Lily lanyards. A young girl sits in a buggy while two ladies sit in front of her playing a guitar and tambourine Liz, the Lily CEO and Founder, stands in front of a large screen making a presentation Two children holding laser guns and wearing orange bibs are standing back to back, poised to shoot A group of people sit around a long oblong table looking at someone presenting at a screen in front of them A man perches casually on a desk with a group of adults seated in a circle around him and a screen in the background A group of young children sitting on beanbags on the floor are roaring with laughter A young girl in a buggy holds a fluffy white rabbit while a man leans over to help Many children and adults of all ages are seated around circular tables in a large room set up for a gala dinner, clapping Several boys and girls of different ages are dancing in a room with disco lights A lady in a Lily t-shirt holds a leaflet open looking at it while another lady stands at her side and looks over her shoulder A large number of people, many in Lily t-shirts, are standing outside a hotel clapping while a man bangs a drum at the front A man wearing oversized sunglasses is laughing close-up with a child Two men are seated behind a desk, one speaking into a microphone, to a group of adults in front of them A girl is concentrating on a craft activity on the table in front of her Two young girls are standing up holding paintings in the air above their heads and smiling A group of children of varying ages are standing together holding paintings they have done in front of them A large group of adults, all wearing Lily t-shirts, are grouped around the front steps of a hotel, smiling and waving A group of young girls ride a carousel, waving, while a man and lady watch and wave back at them from the side

In total over 250 excited individuals descended on the Chesford Grange Hotel in Warwickshire for two very special days filled with friendship and laughter, learning and quiet reflection.

On Saturday morning, an army of ready, willing and able Lily volunteers took charge of almost 100 excitable youngsters at Kids Club. That left parents free to attend a welcome meeting followed by informal group discussions, talks and Q&A sessions, where they were able to ask questions of leading mitochondrial disease specialists, researchers and psychologists, and share their own experiences of the disease.

Over 30 medical professionals from highly specialised rare disease centres in London, Bristol, Cambridge, Oxford, Newcastle and GOSH kindly gave up their time for our mito mums and dads, covering a range of topics such as child loss support, understanding mitochondrial disease and coping strategies for families affected by the disease.

There were research focus groups for those interested, while counsellors from Child Bereavement UK were on hand to offer support to those who had lost children to mitochondrial disease, with 1:1 sessions available for individuals and couples.

Meanwhile, back at Kids Club, it was fun and chaos in equal parts with arts and crafts, laser guns, gaming, a puppet show, a treasure hunt and much, much more. Magic Paul cast a spell over the younger ones who squealed with laughter at his trickery, while the teenagers spent a fascinating day with a group of street parkour entertainers, creating and filming their own show.

In contrast, over in the nursery, a more peaceful day was passed. And if things got too much for anyone, a safe haven could be sort in a soothing sensory room kindly arranged by parents Millie and Tony in memory of their baby son Otto, lost to mitochondrial disease earlier this year.

And then it was time for everyone to come together again, and for the adults to let their hair down too. The traditional gala dinner was followed by a Saturday-night science lesson before the disco and the chance for everyone, young and old, to strut their stuff on the dance floor.

The fun continued at Sunday’s fête before the beat of the traditional samba parade brought everyone together for an emotional finale. A barbecue lunch ensured everyone was well fed before departure, and a frenzy of fond farewells, hugs for old friends and new, and countless cries of “See you next year!” ensued as everyone reluctantly headed home.

First-time Lily Weekenders Sarah and Paul appreciated spending the weekend “being with others who just get it”, while mum Rachel was full of praise for the event: “It was an amazing weekend to meet families who understand what we are going through. We learnt so much and also had some much-needed family time.”

Lily founder and CEO Liz Curtis reflected on the weekend: “It’s always an eye-opener to see first-hand the challenges our mito families face day-to-day, and the effort they make to attend shows how much this weekend means to them. And it’s a humbling experience to see everyone come together and to watch those connections grow and blossom into lifelong friendships.”

Ben Carter, Lily’s Chairman, said: “It was fantastic to see so many first-time families and to hear their incredibly positive feedback on the weekend, many of whom told me it had surpassed all expectations.”

And it’s clear that our medical partners got just as much out of the event too, as Newcastle’s Dr Sarah Pickett reflects on the participation of mito parents in one of the research focus groups: “The insights shared with us were really useful and will be extremely valuable in planning our future research. And it was wonderful to have the opportunity to engage in conversation with lots of different families from different backgrounds – I was overwhelmed by how friendly and keen to talk they all were.”

Huge thanks go out to everyone who helped make this unique weekend happen, and to all who made the journey to be there. The families who are affected by mitochondrial disease are at the centre of our universe – without them we simply wouldn’t be able to do what we do.

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