RW Bro David Hagger, Provincial Grand Masterfor Leicestershire and Rutland Freemasons, visited the headquarters of Lifelites on Wednesday 15th December 2016 for a demonstration of some of the equipment that is provided by the charity to children’s hospices
Lifelites began as project within the Royal Masonic Trust for Girls and Boys and became an independent charity in 2006. It provides specialist entertainment, educational and assistive technology packages to over 9,000 children and young people with life-limiting, life-threatening and disabling conditions in children's hospices including Rainbows Hospice for Children and Young People based in Loughborough.
Caroline Powell, Lifelites Training Manager, drives the Lifelites' training strategy to ensure all of the donated equipment is utilised to its full potential by hospice staff was delighted to demonstrate some of the equipment including Eyegaze which makes a computer accessible for disabled young people. Through a sensor, Eyegaze allows them to track their eye movements enabling them to move the cursor around the screen. Children whose carers and families thought they were unable to communicate, can now do so with this magical technology – 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.
Simone Enefer-Doy, Chief Executive of Lifelites said: 'We are hoping to provide Rainbows in Leicestershire with another new package of our latest technologies in 2018 and will be fundraising for that project in the New Year.'
National children’s charity Lifelites has donated a package of specialist technologies for children at Zoë’s Place Baby Hospice in Coventry
The children who visit the hospice will be able to use the equipment to play games, be creative and communicate with their families, something which may be impossible for them to do otherwise.
The package of equipment and services – which is worth £50,000 over its four year lifespan – was donated completely free of charge by Lifelites. The charity also provides ongoing technical support and training for the hospice staff.
The charity was able to donate the equipment due to the generosity of donors. For this project, money was donated by the Warwickshire Freemasons, as well as the Khoo Teck Puat Foundation, GamesAid, Microsoft and Children with Cancer UK.
One of the pieces of equipment donated was a Magic Carpet. This is a portable box which projects an image on to the floor, a wheelchair or a bed, which children can interact with. This technology gives them the chance to escape the confines of their condition and play one of the many games or animations, such as playing football or splashing in the sea.
The children also received an Eyegaze. This is a piece of equipment which allows those with limited mobility to control a computer using just their eyes. By using the Eyegaze, children who struggle to communicate with their family and their carers are able to do so – often for the first time.
Other items donated include iPads, cameras and touchscreen computers along with lots of games and other software specially designed to be accessible for children with disabilities.
After two days of staff training, families, donors and hospice staff gathered to celebrate the occasion and to officially hand the equipment over to the children at the hospice.
Clare Walton, senior care assistant at Zoë’s Place said: 'The eye gaze equipment will revolutionise the experience that many of our children will have here at Zoë’s Place Baby Hospice. It has already been fantastic to see a glimpse of their full potential and it has been wonderful for the parents to witness just what their children are capable of. It is incredible for the staff and parents to be able to communicate with the children on a far deeper level than we have been able to without this equipment.
'The equipment has so many applications for us and a child can use it for leisure time, completing school work and general communication. It is very easy and intuitive to use and we are currently rolling out the training to all of our staff. We are so thrilled to have this and cannot thank everyone enough who made it happen.'
Simone Enefer-Doy, Chief Executive of Lifelites said: 'We are thrilled to be able to provide equipment for the children at Zoë’s Place who have life-limiting, life-threatening and disabling conditions. The magical technology we have donated can be used to play, to be creative and communicate, and enrich the lives of these children and their families, for as long as is possible. We couldn’t have provided this package if it wasn’t for the generosity of our donors, so for this we are incredibly grateful.'
Lifelites has donated equipment to every children’s hospice in the British Isles over the last 16 years, and continues to provide new technology and ongoing support to ensure that children in hospices have unlimited possibilities.
National children’s technology charity made 2015 Nominet 100
On the 9th December 2015, Nominet Trust, the UK’s leading tech-for-good funder, announced that children’s technology charity Lifelites has been named among the 2015 Nominet Trust 100 (NT100) – a global celebration of the 100 most inspiring uses of digital technology for social good.
Projects featured in the NT100 are using technology to tackle some of the world’s biggest social problems.
Following a global call for nominations earlier this year, Lifelites, the only charity to provide assistive and inclusive technology packages for life limited and disabled babies, children and young adults in hospices across the British Isles, was selected by ten leading judging partners from the tech and charity world in recognition of their work.
The Lifelites technology is simply life changing. For children who use hospices services, their conditions and disabilities mean that many of them cannot move or hold things. Many cannot communicate in traditional ways and there are those who are very prone to infection. All this means that the children have very restricted lives and cannot do things we all take for granted.
Lifelites special iPad apps give children the opportunity to join in with creative activities and express themselves through music and painting.
The mobile Magic Carpet enables them to have experiences they wouldn’t otherwise have – like flying a plane, splashing in the sea or playing football with their brothers or sisters – and the Eyegaze means they can tell their carers what they would like for breakfast, when they are thirsty and can even, for the first time, tell their parents that they love them. It means that the children can enter and stay involved in the world around them for as long as it is possible.
Commenting on their inclusion in the NT100, Simone Enefer-Doy, Chief Executive of Lifelites, said: 'As you can imagine, we are very excited that the work of Lifelites has been recognised by the Nominet 100 judges. This prestigious award is just what we need to help spread the word about our work. Whilst we know that there’s a lot you can do with technology which can make such a difference to the lives of life limited and disabled children in hospices, we also know that our work is often hidden from public view. We are very grateful for the opportunity the Nominet 100 will give us to promote what we do to harness the power of technology and how that can be absolutely life changing for the youngsters we help.'
Vicki Hearn, Director of Nominet Trust, said: 'Remarkable people all over the world are embracing technology to combat some of the most pressing social challenges we face today. This year in particular, the resourcefulness of organisations helping those in urgent need is hugely inspirational. Increasing accessibility to technology is helping foster communities of social tech entrepreneurs worldwide, who are transforming healthcare, access to education, sustainability and civic empowerment. The NT100 seeks to highlight these pioneers, so that others may be encouraged to follow in their footsteps.'
The 2015 NT100 was compiled from a combination of over 500 public nominations and in-house research to produce a shortlist of 150 projects. This shortlist was presented to a panel of Nominet’s judging partners of ten tech and charity organisations, who selected the final 2015 NT100. Representatives from Big Lottery Fund, Comic Relief, Creative England, Facebook, Latimer Group, Nominet, O2 Telefonica, Oxfam, Salesforce and Society Guardian all took part in the selection process.
Information about all of the projects is hosted on the Social Tech Guide (socialtech.org.uk), the world’s largest interactive index of tech for good, which now has almost 1,300 ventures in its database.
Follow the action @socialtechguide / #2015NT100
Lifelites enhancing lives of terminally ill and disabled children in hospices for fifteen years
Lifelites, the only charity to provide assistive and inclusive technology packages to terminally ill and disabled children in all baby and children's hospices across the British Isles, is celebrating 15 years of its work. The charity invited key stakeholders to a drinks reception to mark this important milestone at a special reception on 14 October 2015. Amongst the crowd were Lifelites’ Trustees, Patrons Peter Bowles and Anita Dobson and supporters including Marathon Mason Ewan Gordon from the Provincial Grand Lodge of Oxfordshire who recently ran from John o' Groats to Land's End in support of Lifelites earlier this year.
Lifelites begun as a millennium project of the Royal Masonic Trust for Girls and Boys and became an independent charity in 2006. The charity started off donating computers for children in hospices in England and Wales but since then, it has grown to support over 9,000 life limited children and their families in over 50 hospice service provisions across the British Isles.
Lifelites has kept up with the rapid advancements in technology and tailor each specialist package to the needs of the children. Designed for children with disabilities, the packages include a number of magical items such as specially adapted iPads with grip cases, assistive mice, portable touch screen computers, Eyegaze technology, mobile Magic Carpets and much more, some of which were showcased for guests at the event.
Speaking at the celebration event Chairman of Trustees Lifelites Mike Woodcock, said: 'Lifelites – the small charity with a big heart. It’s hard to believe that it’s been fifteen years since Lifelites started out on its mission of enhancing the lives of thousands of terminally ill and disabled children in hospices across the British Isles. Over time, the charity has gone from strength to strength and continues to provide the most astonishing pieces of technology – some that you will see today and be wowed by – giving children with life limiting conditions a world of opportunities that they would not otherwise have. We must thank the members of the Worshipful Company of Information Technologists for their valued partnership providing the original technical knowhow. Also, we must give a huge thank you to our generous donors, without whom we wouldn’t be here today.'
Simone Enefer-Doy chief executive of Lifelites, said: 'From our humble beginnings I don’t think anyone could have quite imagined what Lifelites would become today – that’s the nature of technology. But as time has gone on, we have turned our attention to harnessing the power of technology to enhance the short lives of the young people in hospices. Whatever their abilities we’ve aimed to seek out equipment that can help them escape the confines of their illness, to play with their brothers and sisters, to be creative, to control something for themselves and communicate – for as long as it is possible. Whatever direction we go in from now on, you can bet that technology will help us to continue to give these kids with limited lives unlimited possibilities. The fact that we’ve been able to do this is in no small part as a result of generous support from the Masonic community over the years and we’ll be forever grateful.'
There is a Lifelites project in all 50 baby and children’s hospices across the British Isles. The hospices do not pay anything towards their Lifelites project and all of Lifelites’ work is funded by donations: the equipment, ongoing technical support and training at each hospice costs Lifelites around £50,000 over four years.
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.’