As Ann-Louise Owens stepped into the spotlight for her hospice's Disney showcase, a remarkable change came over her. The 15-year-old, who lives with a rare genetic disorder causing up to 200 seizures daily, radiated pure happiness and confidence while singing 'Let It Go' from Frozen.
A Life Lit Up by Music
Her mother, Mary, 56, watched with immense pride, moved by her daughter's angelic voice captivating the audience. This performance was a significant triumph for Ann-Louise, who had just celebrated her 15th birthday. Diagnosed at age three with a rare Chromosome 22Q duplication disorder, she battles severe, uncontrolled epilepsy. Music has become her vital connection to the world and a source of immense fun.
She often plays a guitar donated to the East Anglia's Children's Hospices (EACH) by ambassador Ed Sheeran, with his song 'Castle on the Hill' being a firm favourite. Two weeks ago, the Mirror launched its Christmas appeal for the charity Lifelites, aiming to 'Unwrap the Magic of Christmas' for thousands of children like Ann-Louise by funding life-changing technology.
The Power of Play and Technology
Lifelites currently supports 15,000 children across the UK with life-limiting or life-threatening conditions. The charity provides cutting-edge assistive and sensory technology, enabling seriously ill and disabled children to play, create, and communicate in ways often otherwise impossible.
This technology includes:
- Soundbeam: A touch-free device that translates movement into sound.
- Magic Carpet: Projects interactive, moving images onto floors or walls.
- Eyegaze: Tracks eye movement to control a computer.
- Cosmo Switches: Adapted switches that activate toys, lights, and music.
However, an estimated 85,000 children still cannot access Lifelites' resources. Donations to the Mirror's appeal can help bridge this gap, offering precious moments of joy and engagement.
Creating Precious Memories
Ann-Louise has been attending The Treehouse, EACH's hospice in Ipswich, Suffolk, for three years. Her condition causes multiple health issues, including two holes in her heart, asthma, hypermobility, and digestive problems requiring a gastric tube. Recently, her family received the devastating news that her gut is failing.
"We have just been told to make memories," Mary shared. "Her needs have changed drastically... It's hard when you get bad news but you have to work through it. We need to do what's best for her, and if that's filling the house with lights and music, that's what we will do."
Mary credits The Treehouse with filling her daughter's life with joy. "When she plays music and sings she is a different person," she said. "She comes alive and is so happy... It gives her so much confidence." Ann-Louise particularly enjoys the hospice's sensory room and the Lifelites technology.
This Christmas, the family plans to make it extra special. "Ann-Louise wants a karaoke machine for Christmas and all the family will be coming over," Mary explained. "It will be loud but full of joy."
Ray Travasso, 52, a music therapist at The Treehouse, witnesses the transformation daily. "Ann-Louise is like another person... she fully comes alive when she makes music," he said. He uses the Lifelites Soundbeam in sessions, noting it makes music accessible for everyone through movement.
Rob Lightfoot, CEO of Lifelites, stated: "Lifelites technology is truly life-changing. Seeing the transformation in Ann-Louise as she uses the technology to make music is incredible." He expressed gratitude for the support of Mirror readers, which is crucial to reaching more children.
The Mirror Christmas appeal for Lifelites continues, seeking donations to provide this vital technology to thousands more seriously ill children, helping them play, communicate, and create cherished memories with their families.
