Through the magic of technology, Lifelites gives life-limited and disabled children in hospices opportunities they wouldn't otherwise have.
The charity Lifelites is a masonic initiative providing specialist technologies for over 10,000 terminally ill and disabled babies, children and young people using every child’s hospice service across the British Isles - including the six in the London area. These packages enable the children to play, to be creative, control something for themselves and communicate, often for the first time. Their conditions mean that many of the children have limited mobility and reduced dexterity and some cannot communicate in traditional ways. The generous support of Metropolitan Grand Lodge has really helped Lifelites to push the boundaries and donate incredible equipment for children using such hospices.
Lifelites’ specialist iPad packages have applications that give children the opportunity to join in with creative activities like music and painting. The ‘Magic Carpet’ gives them experiences they wouldn’t otherwise have to fly a plane, splash in the sea or play football with their brothers and sisters and ‘Eyegaze’, an eye tracking device, means they can tell their carers what they would like to eat or drink and can even, for the first time, tell their parents that they love them. It means that these children can stay involved with the world around them for as long as it is possible. In addition to this and very importantly, the charity ensures that the equipment they provide is portable so that even if a child cannot get out of bed, the equipment can be taken to them, even into their own homes.
Thanks to Lifelites, the Living Films club at Richard House Children’s Hospice in London has been able to use film making as a focus for fun and creative activities for the children and their brothers and sisters. Jordon, 19, has Duchenne Muscular Dystrophy (DMD) and attends the weekly club. When it comes to movies and film making, Jordon comes alive. He is passionate about film and over the years has produced and starred in a number of short features. Even though Jordan uses a wheelchair and has limited dexterity, he can use all the specially adapted equipment to develop his film editing skills and produce his masterpieces. When Jordan is in his creative element there’s no stopping him. Shahina Haque, Family Support Services Manager, said:
“This is where Jordan can break all boundaries and go beyond limitations; it gives him a chance to escape from reality to where the impossible is made possible. Our young people would not be able to achieve such a high quality of work if we did not have the equipment donated by Lifelites.”
Olivia uses Christopher’s Shooting Star Chase’s Guildford based hospice. Her mum Sarah said:
“Lifelites has given my daughter access to some fantastic technology at Christopher’s. She is 9 years old and has cerebral palsy, epilepsy and visual impairment so watching her use the equipment by herself is so amazing. She uses Eyegaze to look at different animals and I can follow what she’s doing and tell her to find things. She finds the lights and sounds of the Magic Carpet really relaxing, and she smiles and laughs at the fish moving around. It makes me feel really proud of her when I watch her use the programs because there’s not a huge amount for children with Olivia’s condition to do, and this is just so interactive for her. Her brother Charlie likes to help her use Lifelites’ special technologies and often plays with it beside her, so it’s been great bonding for them too.”
Three year old Rio was born prematurely with multiple conditions including Down’s Syndrome, chronic lung disease, partial deafness and two holes in his heart. Rio regularly visits a children’s hospice and really enjoys playing on the Lifelites’ mobile Magic Carpet. Rio’s mum, Nicola, says: “Rio loves the Magic Carpet. He can’t walk yet so he bum-shuffles and rolls over and interacts with the features on the mat. He plays on it for long periods of time and loves everything about it - from splatting the beetles, waving his hands over and moving the water and playing with the fish. This Magic Carpet is a great sensory tool for Rio. It relaxes him when he lies on the carpet moving his arms and legs and hears the sound of the water. The number of different programs means he never gets bored. I can see how excited he gets and it makes me feel so happy watching him play. ”
Seven year old Samuel has cerebral palsy. Samuel’s mum Stephanie says he loves the magical technology Lifelites has provided: “Technology is really important for Samuel because he’s so clever so it’s a way for him to express himself. He likes to make decisions and be independent and the Lifelites’ equipment helps him do this. With his limited mobility, Samuel likes to use the Eyegaze because he doesn’t need his hands to control it – just his eyes. At the moment it’s just games but he will be able to use it a lot more for communication. As much as it makes me sad that he can’t talk, it makes me proud and happy that he can use the equipment and achieve something. It also means that Samuel is able to interact with his friends independently which is important for him and us. Do I dream that he will be able to talk tomorrow? Of course I do and I still hope - but it’ll always be difficult for him, so I know this technology is the future for Samuel.”
Lifelites does not just provide the equipment and walk away: they consult with the staff and children to find out what would be most useful for them; they constantly research the best solutions and make hospice staff aware of what is possible; they raise the funds to provide it; they install it; they train the hospice staff how to use it; they commit to maintaining it in good order and aim to replace it with the latest package of special equipment every four years. The hospices themselves simply could not afford to do what Lifelites does. Without Lifelites these children, for whom every second counts, would miss out on the opportunities which new technology can bring. Because they look after the equipment, hospice staff can concentrate on doing what they do best, caring for the children and their families.
Lifelites’ Chief Executive Simone Enefer-Doy said: “Lifelites could not do what we do for children in London hospices without the generous support of Metropolitan Grand Lodge Freemasons. It is testament to the huge charitable support Freemasons provide and we are proud to be an example of the good work of Freemasons in the Community.”
For more information on Lifelites please click here.