By Simone Enefer-Doy – Chief Executive of Lifelites
Technology is an essential part of our daily lives. For many of us, the idea of going a day without our phones or computers, or not being able to use any technology for work or at home would probably fill us with dread.
Well, imagine being locked inside a body which prevented you from being able to walk, talk or perhaps even move your arms and legs. This is the everyday reality for the 10,000 terminally ill and disabled children in hospices across the British Isles. But there is a unique charity which is harnessing the magical power of technology to change their lives.
Lifelites started as a millennium project, but is now a charity, working hard to raise funds to support its work donating and maintaining specialist, assistive technology packages to children in hospices. This equipment ranges from iPads packed with amazing accessible apps, to the Magic Carpet and Eyegaze.
This equipment is different from the everyday tech that you or I use. This technology is specially adapted so that it can be used by children who have disabilities. Children with severe disabilities often have little to occupy themselves with, and this equipment can provide stimulation and encourage them to engage. They can play games with their brothers and sisters, and friends; something you and I take for granted, but to them it means the world.
One of the pieces of equipment that they can play with is the Magic Carpet. The Magic Carpet is a portable system which projects images and games onto the floor, a wheelchair tray or bed which children can actually play with. This incredible piece of tech gives the children – who are very seriously ill and may have limited mobility – the opportunity to escape the confines of their conditions and embrace a world of make-believe. They can fly a plane, splash in the sea and even play football. Providing opportunities like this means so much to a child whose life is so restricted by their condition. They can let their imaginations run wild and control something for themselves.
But the power of technology for these children doesn’t just provide fun and games. For them it helps with a skill that some of us couldn’t even dream of being without – the ability to communicate. Many of these children are unable to talk and have difficulty finding a way of telling their carers what they want to eat or when they are in pain, or even just tell their parents that they love them. Lifelites removes these barriers using Eyegaze. Eyegaze helps them to control a computer using just their eyes. It is provided by Lifelites, and as well as being packed full of games, comes with a communication app. Children can select words or preset phrases to talk to those around them.
One of the children who is able to benefit from the power of the magical technology donated by Lifelites is Samuel. Eight year old Samuel has cerebral palsy and has limited mobility, so misses out on a lot of things other children his age take for granted. His mum, Stephanie, said: “Technology is really important for Samuel because he’s so clever; it’s a way for him to express himself. Looking at him you might think he doesn’t understand a lot of things, but he’s incredibly alert. We know he’s got plenty in his head and the equipment is a way of trying to get it out. It makes me sad that he can’t talk, but it makes me proud that he can use the equipment to achieve something.
“Do I dream that he will be able to talk tomorrow? Of course I do, and I still hope – but it will always be difficult for him, so I know that this technology is the future for Samuel.”
Providing a package of equipment, and helping to maintain it costs Lifelites over £1,000 a month per hospice, but the hospices do not pay Lifelites a penny. So while the hospice staff concentrate their time and fundraising on looking after the children and families, Lifelites focuses on delivering and maintaining this essential equipment for these children for whom every second counts.
If you’d like to support Lifelites’ work for the 10,000 terminally ill and disabled children in every children’s hospice, find out how you can get involved by visiting the Lifelites website: https://www.lifelites.org/