As our Mirror Christmas appeal for Lifelites continues, we meet mum Lyndsay, whose daughter was once told she’d never walk or talk – yet recently achieved a truly incredible milestone
As Lyndsay Fahey’s daughter Phoebe delivered a speech at a fundraising ball to 200 people her proud mum was overcome with emotion. For it demonstrated the journey her 17-year-old daughter had been on after being born with a rare neurological condition and told she might never walk or talk. Lyndsay said: “Phoebe got up and gave a speech on how incredible Rainbow Hub is, I was so proud of her after all the limitations that were put on her. There wasn’t a dry eye in the house.”
“She can walk and talk, she’s at college and studying performing arts, she is amazing. I do believe all that early input has helped Phoebe achieve what she has achieved.”
Lyndsay, 45, the CEO of Rainbow Hub, in Lancashire, which is a charity that supports children with neurological conditions and physical disabilities and benefits from Lifelites technology, is sharing her powerful story in support of the Mirror’s Christmas charity appeal. We launched our campaign on Monday to raise vital funds for Lifelites, to ‘Unwrap the Magic of Christmas’ for thousands of children to experience the wonder of life-changing technology.
READ MORE: ‘My baby wasn’t alive at birth – then angels brought him back’
Lifelites is the only charity dedicated to providing assistive and sensory technology for youngsters with life-limiting conditions, and partners with 65 children’s hospices and palliative care services across the UK and Ireland. Of the 100,000 children in the UK with life-limiting conditions, 15,000 currently have access to Lifelites tech but 85,000 are still without it.
Among the tech the charity provides is the Eyegaze, which enables users to control a device with just their eyes, the Magic Carpet, which projects interactive images onto a flat surface and Soundbeam, which translates motion into music.
Rainbow Hub supports children with an acquired brain injury or those born with neurological conditions. It was founded 24 years ago as a centre providing conductive education, which is a specialist holistic approach to teaching children with a brain injury. In 2021 Rainbow Hub Nursery opened to children with diagnosed or emerging specialist education needs to provide early years education to any child who wouldn’t be able to access a mainstream nursery.
Last year Rainbow Hub School opened, a real passion project for Lyndsay, who battled in the conventional school system with her daughter Phoebe. The school is for children with physical disabilities and neurological conditions and was purpose built with the children’s needs in mind, so all the classrooms have ceiling hoists and wide corridors, it’s completely accessible.
“We are quite unique, the reason why I developed the school was from my own personal experiences as children with a physical disabilities and brain injuries need to be taught in a certain way, if they find themselves in a Local Authority school very often their needs are not met. From speaking to lots of families we were finding that the children were cared for rather than challenged and what we offer is a holistic approach to education and therapy. Each child has their individual curriculum which combines education and a therapeutic approach.
“It includes conductive education and includes physiotherapy, occupational therapy, speech and language and our model up skills the staff that are working with the children on a daily basis.” The school caters for children aged four to 16 and currently has 11 pupils but is registered to take 32. But in total 135 children a week are using all the Rainbow Hub services.
Lyndsay’s journey with Rainbow Hub began when her daughter Phoebe started coming to the centre. “I became involved in Rainbow Hub nearly 16 years ago when my daughter was born with a neurological condition called Moebius Syndrome, which causes muscle weakness, scoliosis, feeding difficulties and paralysis of the face. It was totally unexpected, I was expecting a healthy baby and at the beginning she was very poorly and I was constantly surrounded by medical professionals who said that Phoebe would be limited in what she could achieve.
“I found Rainbow Hub through my health visitor and I came here and it was amazing because for the first time Phoebe was treated like a little girl and not a medical mystery and they talked about the positives and what she might achieve. I was very lonely, I had no medical knowledge and suddenly you need to become an expert in everything, it was brilliant for Phoebe but it was also brilliant for me as a parent having somewhere to go and being able to talk to other parents who understood what I was going through.
“Before I had Phoebe I was a criminal defence lawyer and when I had her I had to give it up as Phoebe was in and out of hospital, I couldn’t manage my caseload. Then I started volunteering for Rainbow Hub using my skills to write bids and became quite successful at it so they employed me, I then became head of fundraising and then in 2020 I became CEO, so I’ve been on quite a journey.
“For me I feel very privileged to be in my position to help other families, it made such a difference to mine and Phoebe’s life. Phoebe does still have challenges but she is very confident and to see her performing at college and doing solo and a rap is great, she doesn’t let her disability get in the way of anything. All of the children at Rainbow Hub are inspirational and I’m very proud of all of them.”
Lyndsay said Rainbow Hub had really benefited from being awarded Lifelites technology this summer. “It has been life-changing for staff and children and been used in our therapy services, school and nursery and has just opened up so many ways for our children to communicate particularly those that are non-verbal.
“The iPads are a huge hit with the children, the Eyegaze technology is incredible and the PODS sensory tent is a big hit and the iClick switches which the children use for baking enable more independence are popular as they allow children to control their environment by switching lights and fans on and off. One of our pupils, Filip, had a brain tumour when he was five. Lots of schools have turned him away as they couldn’t meet his physical needs. Academically he needs the same challenges as any child his age, but he needs support with overcoming the physical challenges he faces. Only the other day he was in the life skills kitchen and he set off his whisk too early and stuff went flying everywhere, it was so funny, he was laughing, the whole class was laughing, and it is one of those moments that will stay with us forever. He wouldn’t have been able to do that without the iClick technology.
“The £25,000 gift of technology we’ve received means we can help so many more children all at once, we can use it as a group. One little boy named Louis didn’t engage with anything. He wouldn’t touch buttons, but we encouraged him to use a Cosmo Switch – just very simply touching that progressed to using the cause-and-effect toys. Now he’s using the toys without needing the Switch which is remarkable progress for him in such a short space of time.
“Everything we do at Rainbow Hub is promoting independence and this technology allows us to do just that, it has made a tremendous difference to their lives, it gives children a voice and a level of control. We’ve two youngsters who have been able to communicate for the first time with the Eyegaze and we have a 18-year-old, Alex, who has created art work on the Eyegaze. His mum cried when she received it, because for the first time ever it was entirely Alex’s work. He had been able to pick the colours and where he wanted the brush strokes independently. I’d urge Mirror readers to donate to the appeal to make a difference to help other children.”
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: ‘My daughter started her periods aged just 5 due to a rare illness – technology is a lifeline’