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.’
10 September 2014
A talk by Mike Woodcock, President of the Royal Masonic Trust for Girls and Boys, and Chairman of Lifelites Trustees, and Simone Enefer-Doy, Chief Executive of Lifelites
Mike Woodcock: MW Pro Grand Master, brethren, at the Royal Masonic Trust for Girls and Boys we inevitably deal with many distressing cases involving children: those who are orphans, those from single parent families, even those whose parents have taken their own lives. And many being brought up by grandparents who simply cannot afford their upkeep.
Most of these children never had the opportunities that we had when we were young, but because they are children of the wider masonic family, through a mixture of financial support, care and advice, we can help them often substantially and most go on to lead happy and fulfilling adult lives.
However, today we are here to talk about children who neither we nor anyone else can help into adulthood – because these are children who will never have what the other children take for granted – the chance to grow into adults. They are children with life-limiting conditions who are cared for by children’s hospices.
For parents facing the tragedy of losing a child, making the most of the time left is the most precious gift they can give.
Today Simone and I are here to tell you more about Lifelites, a small charity established by the trust 15 years ago to mark the millennium. It remains a masonic charity but through the power of partnership it has been able to work with non-masonic people and organisations to bring unlimited opportunities to children with limited lives.
Fifteen years ago, children’s hospices were a relatively new concept. There were just 17 throughout the British Isles and for the first seven years Lifelites was funded entirely by the RMTGB. However, as the children’s hospice movement grew and new technology provided more and more possibilities, Lifelites was given the independence to raise funds more widely and to partner non-masonic organisations. The result is that today there are 49 children’s hospices with a Lifelites project and presence in every one. Lifelites provides the very best technology, equipment and training enabling children with life-limiting conditions and often with profound disabilities to learn, to explore, to communicate and to play in ways which they, their parents or their carers never thought possible.
What we do is often life-changing not only for 9,000 – yes 9,000 – children being cared for in children’s hospices at any one time, but also for their parents and extended families.
Simone leads the small and dedicated team at Lifelites, and she is now going to explain what a Lifelites project consists of and how it makes such a difference. I will then explain how Freemasons and others have helped to make all of this possible.
Simone Enefer-Doy: Those of you who have visited a children’s hospice will know that they are special places caring for terminally ill children and their families. The child may visit the hospice over a number of years for respite and specialist care, and they will always find a lively home-from-home atmosphere with plenty of activities taking place. I regularly witness the struggles these children and their families face. It is hard to imagine what it is like having a child who cannot communicate or play like other children.
When Daniel first visited Richard House Children’s Hospice in London he told his carer Bernie that he could not do anything because he could only move one arm. But Bernie thought that if he could move one arm then he could hold a camcorder and from that spark of imagination a whole film club was born. Using the Lifelites camcorder to film and the Lifelites computers to edit, Daniel and his friends went on to make action features and now every year they have their own Oscars’ ceremony – wheeling themselves along the red carpet, dressed in their bow ties – and every child gets an Oscar. Daniel’s mum and dad told us that his confidence had gone through the roof, for the first time he had made friends and was doing things he never thought possible. They realised that they would never see their son taking part in a school sports’ day, but for them, this was even better. Sadly, Daniel is no longer with us, but we are proud that Lifelites had such a positive impact on his short life.
As Mike said the children we help often have profound disabilities – some have difficulty controlling their movements, others are less cognitively able and many find it difficult to speak. But Lifelites can change all that. Recent advances in technology are enabling dreams to become a reality, and everything we do is aimed at helping these children – whatever their abilities – to join in and take part.
Wherever you may live in the British Isles, there are children being supported by Lifelites because we have a magical technology project at every one of the 49 children’s hospices. Our typical package includes items like touchscreen computers, games consoles which work through sensing movements, iPads with drop-proof covers, and software that makes it possible for the children to be creative, to communicate and control something themselves. Very importantly, we make sure that the equipment we provide is portable so that even if a child cannot get out of bed, the equipment can be taken to them.
Most children love playing computer games, but off the shelf software is not designed with disabilities in mind. So we have worked with students at London South Bank University to develop games which are unique to Lifelites.
Another amazing piece of equipment is the 'magic carpet' that projects an image onto the floor which the children can interact with. It gives them the chance to escape the confines of their condition and to embrace a world of make-believe, flying an aeroplane, splashing in the sea or playing football. We also provide software that enables those who can only move their heads to use a computer. But sometimes the only part of their body they can move is their eyes so we also provide cutting edge technology called eyegaze. Eyegaze enables children to access a computer through a camera which tracks their eye movements, enabling them to move the cursor around the screen. Through eyegaze, children whose carers and families thought they were unable to communicate at all, can now do so – they can tell their carers what they would like for breakfast, when they are thirsty, they can explore new worlds and can even, for the first time, tell their parents that they love them. It means that these children can enter and stay involved in the world around them for as long as it is possible.
But we do not just provide the equipment and walk away: first we consult with the staff and children to find out what would be most useful for them; we constantly research the best solutions and make hospice staff aware of what is possible; we raise the funds to provide it, we install it; we train the hospice staff in how to use it, we commit to maintaining it in good order and we aim to replace every four years.
With the addition of exciting new items like eyegaze and the magic carpet this now costs around £50,000 for each hospice every four years. This means that we need to raise £12,500 for each of our 49 projects or over £600,000 every year.
The hospices themselves simply could not afford to do what we do. Without Lifelites these children, for whom every second counts, would miss out on the opportunities which new technology can bring. Because we look after the equipment, hospice staff can concentrate on doing what they do best: caring for the children and their families. What we provide comes at no cost to the hospice and does not detract in any way from their fundraising.
David Strudley, Chief Executive of Acorns Children’s hospices in Birmingham, Walsall and Worcester tells people: 'Whatever the problem, nothing seems to be too difficult for Lifelites to solve for us or with us. As technology moves on, so does Lifelites. Our children – however severely disabled – are able to use the equipment for themselves. It does not matter that a child cannot communicate in the traditional way anymore – non-verbal communication is not a problem. Lifelites has helped us to discover better ways of looking after our children.
'Each time I visit a hospice I am reminded that the children are not just patients, they are funny, joyous people, and it is possible for a short life to be a good life, a happy life and a full life.'
What we do is in no small part due to the support we continue to receive from Freemasons. So I would like to say thank you on behalf of all those 9,000 children for the help you have given – and we hope you will continue to give – for our vital work which makes such a difference.
Mike Woodcock: Brethren, even though we work with 49 children’s hospices and raise all of our own funds we have just five full time staff and this is only possible because we have so many volunteers who not only raise funds but also help deliver our services, most are Freemasons and some of them are here today including: our trustees and members of our management committee; individual Freemasons who visit the hospices helping to set up and maintain the equipment and to train staff in how to use it; at least two-thirds of the Provincial Grand Masters sitting behind me whose Provinces have made generous and sometimes substantial donations to support our work. And I also include generous support from other masonic orders, from the Mark Benevolent Fund and the Grand Lodges of Scotland and Ireland, and the many others here today who have either made personal donations or taken part in the many Lifelites fundraising initiatives.
As chairman of Lifelites trustees I too extend a huge thank you to you all. Lifelites is further proof that masonic charity is not just inward looking and that Freemasons not only give generously but involve themselves directly in caring for the less fortunate.
Unlike the main masonic charities we do not receive funding from the festival system, but importantly we are able to raise funds from outside Freemasonry and we work in partnership with non-masonic organisations to help deliver our aims.
Significant non-masonic donors have included: the Thomas Cook Children’s Charity; The Khoo Teck Puat Foundation; Dixons Group who made Lifelites their chosen charity; GamesAid, Microsoft, London South Bank University, Sainsbury’s (here in holborn), Children with Cancer UK, Buckinghamshire Building Society and many others who have supported us. London Underground allow us to make a christmas collection. We even have Ladies that Lunch who raise funds for us.
By working with others we have been able to triple the funds donated by freemasons enabling us to do so much more.
But partnership is not just about fundraising, Lifelites also works with others in delivering its services.
The Worshipful Company of Information Technologists has been our partner from day one, bringing their specialist knowledge and expertise to our management committee as well as donating funds themselves. As Simone said we also work in true partnership with the hospices themselves to ensure maximum impact.
Today the charity world is changing rapidly and we need to respond to change if we are to become even more successful. There is intense competition for funds meaning that we have to employ management techniques derived from the commercial sector, especially in marketing and fundraising. Charities have to be able to find, select and utilise the very best of new ideas – no one has a monopoly of these. It is no longer enough to simply ask for support because we have a worthy cause. The emphasis has to be on performance and impact assessment requiring rigorous questioning, enabling potential donors to make informed choices. As a result of being a leader in innovation we have been proud to receive no less than four national industry awards recognising our achievements.
So, today we celebrate the fifteen year success of a small charity founded by Freemasons which has grown to encompass every children’s hospice in the british isles and in doing so we have been able to raise the profile of the Craft as a modern and effective force for good in society.
Charity may not be the main purpose of Freemasonry but we all know that it is high on our agenda and in many ways characterises the kind of people we are. Freemasonry has a long, proud and enviable record in charity and Lifelites has shown that if we use the power of partnership we can achieve even more.
Most Worshipful Pro Grand Master, the last time that I had the privilege of addressing Grand Lodge, I looked up at the depiction of Pythagoras on the temple frieze in the west and reminded us that the ancient Knights of Pythagoras had a saying, 'that a man never stands as tall as when he kneels to help a child'
Today, every Freemason who has supported Lifelites stands very tall indeed.
Thank you again and please remember that if ever you would like to become more involved in our work we are only a telephone call away or you could arrange to visit our small office at 26 Great Queen Street – you will be most welcome.
Brethren, thank you for listening to the Lifelites story and thank you again for giving so many children the power to control at least something in their lives and their parents the joy of seeing them live their short lives to the full.
State-of-the-art technology that works by tracking its user’s eye movement has been donated to Tŷ Hafan children’s hospice by award-winning charity Lifelites. The Eye Gaze technology, unveiled at the hospice in south Wales, means that all children – whatever their disability or illness – will have access to the benefits of technology.
Lifelites has been supported by funding from the Province of Monmouthshire and Thomas Cook Children’s Charity, among others. Monmouthshire PGM the Rev Malcolm Lane, a Lifelites trustee, said: ‘We know the money donated will be put to excellent use, providing specialist technology for children at the Lifelites project closest to our hearts here in south Wales.’
Stay, play and learn
Three Zoë’s Place Baby Hospices are to receive packages of fun technology thanks to Lifelites.
The first was delivered to the Middlesbrough Hospice and contained an array of technology devices designed for babies and disabled youngsters. Simone Enefer-Doy, chief executive of Lifelites, says: ‘This is a great start to 2013 – we’re so pleased to turn our technological expertise to providing these babies and toddlers with new opportunities.’
A total of 13 children’s hospices will benefit from a Lifelites package this year, thanks to the Thomas Cook Children’s Charity, which made a £60,000 donation towards the technology charity’s projects. A Lifelites package at each site costs around £37,500 to install and maintain over four years.
Lifelites was founded as a Millennium Project in 1999 and became a separate but subsidiary charity of the RMTGB in 2006, and continues to benefit from RMTGB support. Lifelites does not receive any central masonic funds, but raises money from different sources.
Masons make up the vast majority of Lifelites’ technical support volunteers for the projects it undertakes in children’s hospices.
Lifelites, the children’s technology charity, has expanded its operations, picking up several awards and securing record funds in the process
A subsidiary of the Royal Masonic Trust for Girls and Boys (RMTGB), Lifelites donates packages of fun and educational technology for children who stay, learn and play in all 44 children’s hospices in the country.
In addition to providing the equipment, Lifelites installs and maintains it, as well as training care staff. It became a charity in its own right in 2006, and since then the RMTGB has provided in-kind assistance rather than financial support. This means Lifelites relies on donations from other sources including Freemasons, the public and companies such as Thomas Cook – whose Children’s Charity donated £60,000 in 2011 – and organisations like GamesAid, the gaming industry’s charity.
Most of the charity’s volunteers are Freemasons, who assist in providing technological support in many of the projects and acting as trustees. ‘Our success is underpinned by our links with Freemasonry,’ explains Lifelites chief executive Simone Enefer-Doy. ‘Their support is vital to our continued growth. We also have a great relationship with both the RMTGB and Provinces across the country.’
A major masonic contribution last year came from the West Riding Masonic Charities that enabled a Soundbeam to be installed at the Forget Me Not Children’s Hospice in Huddersfield. By using movement to produce sound, the Soundbeam enables children with even the most profound physical and learning disabilities to make music using whatever movement they can manage.
Provinces can become involved with Lifelites – who can showcase the equipment at masonic or other events – thanks to a donation from the Province of Surrey, which enabled the purchase of demonstration equipment. Lifelites staff can also attend after-dinner sessions and provide promotional material.