State of independence
Life-limited and disabled children are exploring the world in new ways thanks to cutting-edge technology provided by Lifelites. Imogen Beecroft talks to Chief Executive Simone Enefer-Doy about its work and masonic origins
When Daniel was diagnosed with a terminal illness, he told his carers that he ‘couldn’t do anything’. His condition had deteriorated so much that when he entered Richard House Children’s Hospice in London he was able to move just one arm. But one carer thought differently, recognising that if Daniel could move one arm, he could probably hold a video camera.
So the hospice developed a film club – a place where children could use technology specifically adapted for their needs to make films and animations.
Richard House now hosts its own Oscars-inspired ceremony every year. Parents come and watch as each child receives an award for their cinematographic efforts. But the technology doesn’t come cheap, and it’s only thanks to the work of the staff at the children’s charity Lifelites, led by Simone Enefer-Doy, that this was possible.
Working with children’s hospices across the UK and Ireland, Lifelites provides specialised technology to terminally ill children, many of whom have no other form of entertainment or communication. ‘When you have a disability you have to find different ways of doing things, but you don’t have to be excluded from activities. With technology we can explore those ways,’ says Enefer-Doy.
Lifelites began in 1998 as part of a Royal Masonic Trust for Girls and Boys (RMTGB) millennium initiative. Les Hutchinson, Chief Executive of the RMTGB, visited seventeen children’s hospices to learn what their needs were. ‘We wanted to support them by harnessing technology that could be used by kids with very significant disabilities, who could get some stimulation and enjoyment from what we could provide.’
With more children’s hospices opening, it was clear by 2006 that the initial £7.5 million provided by the RMTGB might not be sufficient for the technology initiative to survive. ‘We predicted the movement would grow, but we didn’t think there would be forty-nine hospices within fifteen years,’ says Les. ‘Each of these brought a great deal of expense, because we needed to provide all the wiring, software, training and ongoing support for our technology. But then we thought, why don’t we set up a separate charity able to raise funds in its own right?’ And so Lifelites was born.
‘The RMTGB is very generous with its support and helps us to network within Freemasonry,’ explains Enefer-Doy. The RMTGB provides Lifelites with its offices and deals with its accounts, leaving the team of five to focus on fundraising and delivering the hospice projects. Beyond this, Lifelites is free to fundraise outside the masonic system, making it the only masonic charity to do so.
‘Lifelites is a really good example of how Freemasonry has created something that is providing a valuable service to the wider society,’ says Les. ‘It’s a masonic charity but it has a completely non-masonic outlook. Its only purpose is to support the children’s hospice movement.’
With a fundraising background including time spent at Scope and Marie Curie, Enefer-Doy was appointed chief executive in 2006 and the past few years have seen Lifelites flourish, with the charity winning a Tech4Good Award in 2011. Each hospice costs Lifelites about £50,000 over four years so the charity aims to replace the equipment at a quarter of the hospices every year. ‘We work on a four-year cycle, and consult with the hospices and children about what new technology they’d like before going to our donors,’ says Enefer-Doy.
Under her care, Lifelites has fostered many partnerships outside Freemasonry, both corporate and individual. The Thomas Cook Children’s Charity, for example, has been generous in its support. ‘They chose us because we said we’d provide these children with a great holiday, as they can’t go on normal holidays with their families.’
The funds raised by Thomas Cook Children’s Charity helped Lifelites to provide a flight simulator for Julia’s House in Dorset. ‘The staff got the children to pack a suitcase and make their own passports with the Lifelites technology. What they’re trying to do is give them the experience of going on a plane, even though they’re unable to.’
Lifelites is also working with students studying video game design at London South Bank University, as there are no high-level games developed specifically for people with disabilities, particularly for those aged thirteen to eighteen. ‘We pitched this to the students, and they designed games that can be played by young people with disabilities, who might be very cognitively able, if not physically so. The next step is for the developers to get these games produced,’ says Enefer-Doy.
With charity fundraising becoming increasingly competitive, Lifelites recently employed a new fundraising development manager with the goal of diversifying its funding base. The Ladies that Lunch for Lifelites initiative, for example, encourages women to get together with friends over a leisurely lunch to raise money for a good cause. ‘Gender-specific events work really well in fundraising so we tried to think what we could do for women only that could build our support,’ says Enefer-Doy.
Raising funds isn’t the only challenge Lifelites faces. ‘The children’s hospice movement itself is developing. One of the biggest issues is transition units for people at children’s hospices who reach eighteen, so we’re looking at what we can do. We want to keep our focus on technologies for disabilities and think about what we could provide for these older age groups.’
It’s a big task, but a rewarding one for Enefer-Doy and her team. ‘We’re small, we’re unknown, we don’t get a lot of automatic donations. But then, when people go with us to the hospices and see the technology and how excited the parents and kids are, it’s very moving and they understand why what we do is so important.’
For more information about Lifelites, please visit www.lifelites.org or call 020 7440 4200
Keeping in touch
The donations made by Lifelites have had a huge impact on disabled children like Josh Dolling, aged eleven, who was diagnosed with a brain tumour at twenty-six months. Josh is now paralysed down his left side, has impaired vision and suffers seizures.
His mother Helen says: ‘Josh has specialised needs and requires 24-hour care. But when playing games on the Lifelites touch-screen computer at his hospice (EACH Milton), he is engrossed and calm. I think it’s because he has some form of control. There’s no way we could afford to buy the computer, so for him to have it at the hospice is wonderful.’
EYEGAZE: Operated by just a flicker of the eye, Eyegaze technology lets even the most severely disabled children control a computer screen. Cost: £4,368
Simone Enefer-Doy: ‘I saw Eyegaze in 2007, but at £15,000 it was beyond our reach. Last year it dropped below £5,000 and I thought: “We can do this.”’
MOBILE MAGIC CARPET: Projecting an interactive image onto the floor, children can kick up leaves or play in the waves, even from their own beds. Cost: £7,000
Simone Enefer-Doy: ‘It used to be static and too expensive but now that it’s mobile it’s exactly what we want.’