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Lifelites - Harnessing Technology to Empower Children with Life-Limiting Conditions

Lifelites harness innovative technology to empower children and young people with life-limiting conditions, along with their families, to experience unforgettable moments of connection and joy. Leicestershire & Rutland Freemasons have been consistently supporting this mission, working together to give children using palliative care services across the county the chance to discover a world where anything is possible, using assistive and inclusive technology.

By becoming a platinum partner for Lifelites, the Leicestershire & Rutland Freemasons' Charity (LRFC) pledged four years of support to help improve the impact and increase the reach, enabling children and families to connect and create cherished memories.

“Felix has a rare neurological condition called Miller-Dieker Syndrome. If you can imagine a typical brain has lots of folds and groves or squiggles Felix doesn’t have that, his is completely smooth. This affects him greatly so he is unable to walk or sit unaided or talk, his chest is compromised so a cold can send him into hospital very easily, he is unable to eat orally so is peg fed and he has seizures daily. Children with this condition don’t normally make it past infancy. However he is the most amazing boy and is defying the odds every day! He’s our little miracle!

We realised very early on that Felix loved music. My husband plays the guitar and would play to him all the time. You could see how Felix loved it by the way he responded, he was just transfixed on Dan and the guitar. We soon discovered that Felix could use the Eyegaze to play music and he and my husband could play together. This was the most incredible feeling! We even got our daughter and myself an instrument and we all played together. For us all to be playing music together is a feeling which is so hard to express, I feel words can’t give it justice. It was so overwhelming I think it also made us realise just how hard it is to find something totally inclusive but this was it! Felix loves listening to music, loves listening to Dan playing his guitar and the fact that he could actually join in is priceless. The equipment provided by Lifelites is something so special to us. Being able to access this makes me feel so happy because I know he really is having the best time. Thank you” Alex, Felix’s mum

Rob Lightfoot, CEO of Lifelites said “We are delighted to have support from the LRFC, who have supported us for several years. Their support will help us to provide packages of technology to empower children and young people with life-limiting conditions to engage and interact with the people they love and enjoy the world they live in.”


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