15 year old Ann-Louise has a rare life-limiting condition, but lights up when she sings. As our Mirror Christmas appeal for Lifelites continues, her mum Mary shares how the charity’s clever tech helps her daughter enjoy life
As Ann-Louise Owens took to the stage to perform in her hospice’s Disney showcase, she took on an amazing transformation. The teenager, who has a rare life-limiting condition, which causes up to 200 absent seizures a day was beaming with happiness and confidence as she sang ‘Let It Go’ from Frozen. Her mum Mary, 56, watched with pride as her daughter’s angelic voice wowed the audience. She felt emotional as this moment was a real triumph for Ann-Louise.
Ann-Louise, who yesterday celebrated her 15th birthday, was diagnosed with rare Chromosome 22Q duplication genetic disorder at the age of three. The condition causes severe uncontrolled epilepsy but music is a way for her to connect and have fun. She regularly plays on a guitar gifted by East Anglia’s Children’s Hospices’ (EACH) ambassador, Ed Sheeran, and his hit song Castle on the Hill is her favourite.
READ MORE: Olly Murs ‘blown away’ in special video for schoolboy who plays music with his eyes
Two weeks ago we launched our Mirror Christmas appeal in aid of Lifelites to ‘Unwrap the Magic of Christmas’ for thousands of children and young people like Ann-Louise. The campaign aims to raise vital funds for them to experience the wonder of life-changing technology.
Lifelites currently reach 15,000 children with life-limiting conditions. The charity provides seriously ill and disabled children the chance to play, create and communicate, using the power of assistive and sensory technology. This includes the Soundbeam, a touch-free musical device that uses sensor technology to translate movement into sound, Magic Carpet, Magic Carpet, which projects moving images onto the floor (or any suitable surface) to enable children to interact and control their environment, the Eyegaze, which tracks eye movements and allows children to control a computer, and more.
However, there are still 85,000 children without access to Lifelites. By donating to our appeal, Mirror readers can help thousands more receive this life-changing technology, enhancing the life of a seriously ill or disabled child and help them make the most of the precious moments they have with their families.
Ann-Louise has attended The Treehouse, EACH’s hospice in Ipswich, Suffolk, for three years. Mary, said: “She loves her music and Ed Sheeran and she gets to play his guitar that he gifted to the hospice when she is here. She loves singing his hit Castle on the Hill and went to his concert in Ipswich in July.”
As a result of her condition, Ann-Louise has two holes in her heart, has asthma, hypermobility and digestive problems that means she is fed via a gastric tube. Mary said: “Ann-Louise’s condition means she has two copies of the 22Q chromosome, which makes everything go wrong. She can walk but not very far as she has daily seizures – around 200 absent and tonic clonic seizures a day, which is why she’s in a wheelchair as it makes it difficult to get around.
“Because it’s such a rare condition doctors don’t know much about it so it’s tough. She’s now on experimental drugs for her epilepsy as everything else has failed.” Sadly Mary was given news last week about Ann-Louise that every parent dreads. She said: “We found out that her gut is failing. There will be more trouble when her stomach gives up. We have just been told to make memories.
“Her needs have changed drastically and her condition has worsened as she’s gotten older. It’s been a long road and we now have to think about what we want for her going forward when it comes to medical intervention. 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 says she can’t thank The Treehouse enough for helping fill Ann-Louise’s life with joy. “She gets so much from coming to The Treehouse and has found her love of music. She sang ‘Let It Go’ from Frozen in front of everybody and wore a princess dress. It was amazing and she makes me very proud.
“When she plays music and sings she is a different person, she doesn’t say anything at all hardly to anyone until she’s got a microphone and music and then she comes alive and is so happy. She totally changes, you wouldn’t think it was the same person when you see her singing, it gives her so much confidence.
“We get so much from coming to the hospice, they support me as well and Ann-Louise, who comes to stay two nights a month. She loves the Lifelites technology – she enjoys the Sensory Room and the Magic Carpet and the Cosmo Switches – she likes pressing them and hearing music.
“This Christmas we will make it extra special, Ann-Louise wants a karaoke machine for Christmas and all the family will be coming over to share it with us. It will be loud but full of joy. Having access to the Lifelites technology and the music is extremely important for Ann-Louise as it turns her into a totally different child, she can express all her emotions through play and music. It’s one of the only times you see her truly happy, laughing and having fun.”
Ray Travasso, 52, music therapist at The Treehouse, said: “Ann-Louise is like another person and she fully comes alive when she makes music, she’s just happy sitting at the piano and playing and listening to songs and singing along. In our music therapy sessions we sing but I’ve noticed she can be a quiet girl sometimes, a little bit anxious, and have her head down. But when we play music her head is up, her eyes are open and she’s fully engaged and she’s totally in the moment.
“That’s one of the wonderful things about music, it can really unlock things for people and someone like Ann-Louise is a brilliant example of that. She was able to sing in front of other people at our Disney night. She was great and fully alive.
“It’s really rewarding seeing people change through music, I get such a buzz from seeing the transformation. For people like Ann-Louise, who feel they haven’t got a place in this world, music can make them be somebody and engage. I use the Lifelites Soundbeam in my classes which is amazing – it works through movement and movement makes the sounds which makes music accessible for everyone.”
Rob Lightfoot, CEO of Lifelites, said: “Lifelites technology is truly life-changing. Seeing the transformation in Ann-Louise as she uses the technology to make music is incredible. With thousands of children still unable to access this kind of support, we are so grateful to Mirror readers for supporting our Appeal.”
Unwrap the magic of Christmas
Donate today and unwrap the Magic of Christmas for seriously ill children. Donations from Mirror readers will be used to provide seriously ill children access to life-changing technology that will enable them to play, communicate and have fun in ways that would otherwise be impossible.
- Donate online HERE
- Text MIRROR to 70085 to give £10. To donate without receiving further updates, text MIRRORNOINFO. Texts will cost the donation amount plus one standard network rate message, and you’ll be opting into hearing more from Lifelites.
- Donate by post: Send cheques made payable to Lifelites to Lifelites, 60 Great Queen Street, London WC2B 5AZ
READ MORE: ‘Our children’s hospice creates magical Christmas memories for families to treasure’
Source: Mirror
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