On day two of our Mirror Christmas campaign, we meet the children whose lives have been enriched by Lifelites assistive and sensory tech, including nine-year-old Seb with cerebral palsy. His mum Hannah shares their story…
Their faces light up as they play in the snow, switch on Christmas lights for the first time and even ask Santa for a pony. The happiness experienced by the children starring in the Lifelites Christmas campaign video is clear to see – and completely contagious. And indeed, the children’s beautiful smiles have melted the hearts of Mirror readers. Yesterday we launched our Christmas charity appeal, to raise vital funds for Lifelites, to enable more children with life-limiting conditions to experience the same joy.
Lifelites provide seriously ill and disabled children the chance to play, create and communicate using the power of assistive and sensory technology. The charity makes the impossible possible for children with the most complex conditions. Of the 100,000 children in the UK with life-limiting conditions, 15,000 currently have access to Lifelites life-changing technology which helps them connect with their families, learn and have fun.
READ MORE: ‘Our child was locked in his body until incredible gift opened up his world’
But 85,000 are still without. With your help, we hope to change this. Lifelites CEO Rob Lightfoot, says: “We are hugely grateful to the Mirror for supporting us this Christmas. Being able to help a child experience the same joy and connection we see in the video is vital.”
Lifelites technology includes the Eyegaze, Soundbeam, PODS sensory tent, iClick Switches, Cosmo Switches, Magic Carpet, Tilt and Touch Table, Meta Quest 3.0 virtual reality, iPads, AV1Robot and Interactive Entertainment Hub. A standard package of technology that Lifelites donates starts at £25,000.
Seb Coles, nine, from Camarthenshire, has cerebral palsy and is supported by Tŷ Hafan Children’s Hospice in South Wales, along with his mum, dad, Troy, and little sister Holly, five. In Lifelite’s Christmas video, he can be seen using the Eyegaze to say ‘Thank You Lifelites’ – something his mum Hannah, 39, a former district nurse, never thought she’d hear. The tech has given Seb a voice she never knew existed.
“He uses technology every day to communicate, without it he’d be lost. When he used the technology to tell me: ‘I love you’ for the first time, it was so emotional. Seb suffered a traumatic brain injury at 12 weeks and suffered three cardiac arrests that caused significant brain damage. It was devastating.”
Seb started learning to sign at school and by the age of four could sign “yes” and “no”. “I didn’t even know that he knew my name was ‘mum’ – the first time he looked at me and signed the word ‘mum’ I nearly lay down on the floor and cried,” says Hannah. “He was introduced to the Eyegaze and then, when we realised he was able to reach out, we moved onto a special touch tablet and he started putting two words together. It unlocked something inside him and gave him a voice.
“Seb is non-verbal and uses the Eyegaze to spell out words and talk for him.” Seb can tell his mum if he’s in pain and can crack jokes. “It has changed everything,” says Hannah.
“He can’t play with traditional toys but he can press the buttons on the Lifelites technology using one finger. It’s the first time he’s been able to play independently, that’s massive. He loves the brightly coloured Cosmo Switches and Tilt and Touch Table to play Rasta Mouse. Coming to Tŷ Hafan and using the Lifelites technology has been a game changer for us.
“For a child who can’t move and has visual impairment, being able to see a bright light and engage is incredibly vital. It’s life changing for the whole family. You have this tiny glimmer of hope, and think, ‘Did my child just see that?’ And simply to see your child content is massive, especially when they are life-limited. I’d urge Mirror readers to donate to give a child like Seb a Christmas full of joy and cheer and access to this amazing technology.”
Savanah-Bleu O’Brien, six, from Cardiff, is also seen in the video, asking: “Dear Santa, I wish my favourite pony for Christmas” on the Eyegaze as well as using the iClick Switches to turn on the festive tree lights.
Her mum Jayde, 34, says: “Savannah-Bleu has Aicardi-Goutières syndrome, which is a rare genetic disorder that primarily affects the brain and immune system, causing symptoms like developmental delays, muscle stiffness, and recurrent fevers.
“She uses the Eyegaze to play games or musical instruments, loves watching movies and YouTube, and the bright sensory lights.
“She’s the most precious beautiful little girl in the world – she makes us smile everyday. To see her ask Santa for a pony this Christmas and to switch on the tree lights using iClick Switches is really amazing.”
Then there’s Esmai Lewis, nine, from Vale of Glamorgan, who is seen playing with the colourful Cosmo Switches at the start of the video. Mum, Samiah Roddy, 38, says: “Esmai loves singing, dancing and anything to do with music as well as using Cosmo Switches, she also loves the Soundbeam. To see her interacting in the video was wonderful.”
Esmai was diagnosed with CHARGE Syndrome at a few months old, a rare genetic condition that affects multiple areas of the body, often involving a combination of eye and heart defects, blocked nasal passages, growth and development retardation, genital abnormalities, and ear abnormalities.
“This appeal is very important as it can honestly change the lives of not only the children with disabilities and limited communication but also help the families communicate and have better understanding of their child’s needs.”
Lucian Neale, two, from Sofrydd, Newport, is the little boy seen playing and laughing at the start of the video in the PODS sensory tent with his mum, Sam, 38. She said: “He loves the PODS sensory tent, Cosmo Switches and Tilt and Touch table. During the video shoot we had an amazing time playing together in the PODS”.
He was diagnosed with SMA type1, the most severe form of spinal muscular atrophy, at seven weeks-old. “We were absolutely devastated after losing our other son Carson at 30 weeks, he was born sleeping, we couldn’t believe this was happening all over again.
“But despite everything Lucian is a very strong independent smiling, bossy and strong willed. It’s very important for Mirror readers to support this appeal as no child should go without play and inclusion in life, especially at Christmas.”
Charlotte Veysey, 13, from Ebbw Vale, can be seen in the video using the Eyegaze. Her mum, Tammy, 45, said: “Charlotte loves playing games on her eye gaze and is particularly fond of the custard pie splat one, she also loves sensory lights and has Disney projected on her ceiling.
“Charlotte was diagnosed with Rett syndrome at 15 months, a rare genetic neurological and developmental disorder that affects the way the brain develops. It causes a progressive loss of motor skills and language.
“For Charlotte, access to this technology is really important as it gives her so much pleasure alongside the benefit of communication which is huge and life changing for a child who is non-verbal and non-mobile.”
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
