Annual Review 2020
Contents The difference you’ve made
From the Chairman and Chief Executive We are delighted to present to you our 2020 Annual Review. It has been a difficult time for all of us over the past few months. More than ever, with the Covid-19 pandemic, we have all experienced a taste of the challenges of being isolated, of not being able to communicate with our loved ones in the usual ways or enjoy many of life’s pleasures. For life-limited and disabled children, this is their everyday reality. Now, we can understand the need for Lifelites-special technologies more than ever. We hope you enjoy reading our uplifting stories about the children we support and the people who support us to make what we do possible. Thank you for helping Lifelites during this difficult time to give children with limited lives unlimited possibilities.
What is Lifelites? The magic in action Kenzo’s story John’s story The magic that we make POD – sensory tent in a bag Putting Lifelites on the map Our community Spreading magic Become a regular giver Can you make a regular gift? Our donations & expenditure Donation form Who’s your friend?
Simone Enefer-Doy Chief Executive 2
Mike Woodcock Chairman
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@Lifelites @Lifelites Tel: 0207 440 4200 Email: firstname.lastname@example.org www.lifelites.org
The difference you’ve made
What is Lifelites?
Children using every children’s hospice service across the British Isles have access to magical technology from Lifelites. In the last financial year we:
Travelled over 12,100 miles delivering and maintaining equipment, and providing training.
Donated over 1,350 pieces of specialist technology.
Lifelites is the only charity working with every children’s hospice service across the British Isles to enrich the lives of children and young people with life-limiting illnesses and disabilities by donating the latest assistive and inclusive technology, specially adapted for a wide range of needs and abilities. Thanks to Lifelites, these children and young people can escape the confines of their conditions and use the technology we donate to play, be creative, control something for themselves and communicate for as long as it is possible. All of our equipment, along with training for the hospice staff, a technical support helpline and equipment maintenance is completely free of charge.
Reached over 10,000 life-limited and disabled children and young people.
Delivered 60 days of training for hospice staff. 3
The magic in action At Lifelites, we rely on wonderful hospice staff to utilise our equipment to its fullest potential for the children in their care. Here’s what some of the carers had to say about the Lifelites technology:
St Oswald’s “Our team love the Soundbeam because it offers so many possibilities for children who have low cognitive ability or visual impairments. One parent recently told us that he was struggling to find new ways to encourage his daughter to keep moving and to provide her with rewarding feedback. He felt he was clutching at straws. The Soundbeam is perfect for this child who loves ‘making music’ as she moves.”
ellenor “Using technology like Eyegazze helps and supports young people by giving them a voice they never thought they would be able to have. iPads help children interact and communicate massively as they can be used for different communication aids.”
Charlton Farm “One story I would like to share is when a child used Eyegaze for the first time. The child is non-verbal, has limited movement and needs full help and support. I introduced the Eyegaze to him to play the cause and effect games. To see his face light up as he knocked down one of the funny monsters was magical! We tried the paint application, where he was able to colour the screen with his eyes and choose the colours he wanted. Once the picture was finished he wanted to give it to his mum. When he gave it to her, she cried with joy.”
Claire House “Playing with the Lifelites special iPads is a big part of being at Claire House. Children may be non-verbal and immobile but can physically swipe a finger to control their iPad. They have a sense of independence as they can still make their own choices and have all their favourite music, shows, and games in one place!”
Julia’s House Brian House “Leandra loves the Magic Carpet where she enjoys playing Pac Man or sitting in a pond surrounded by swimming fish. Leandra has stigma in both eyes, impaired hearing, and she struggles with hand-eye coordination. Playing on the Magic Carpet enables her to communicate and boosts her mobility and confidence. It has been wonderful to see her playing with her siblings and peers, which has had a positive effect on her emotional wellbeing.”
“Gaming is becoming an everyday activity to many and to some it isn’t achievable. With your equipment and options, we can make it accessible to all that choose or would enjoy the experience.”
Demelza Hospice “Joshua has Galloway-Mowat syndrome, a rare genetic disorder, so he has difficulties moving and speaking. His favourite device is the iPad, which he uses every time he’s here. He can be very hyperactive and agitated, but the iPad is a fantastic way for him to relax and calm down.”
Bluebell Wood “Little Madison has Down syndrome, a chronic lung disease, is oxygen dependent, and already had open heart surgery. But like so many other children, she gets excited about anything sensory or brightly coloured. She loves the Magic Carpet where she can play with bubbles and balloons, which is good for her movement. She is having a lot of fun with the bright, moving lights and exciting sounds of the Magic Carpet.”
Thanks to Lifelites children using hospice services can enjoy all sorts of music making technologies irrespective of their abilities - and use any part of their body to create their own music.
Kenzo loves being creative and has an amazing sense of humour. He is a typical seven-year-old boy who is passionate about building things, making noise, and being independent. But with mitochondrial complex 1 deficiency, he often cannot do the things he would like to do. He has lost the majority of his mobility and speech, which makes communicating difficult and it is frustrating for him. As if that wasn’t enough, Kenzo also has autism. It is often hard for him to understand why he cannot do things and needs to be patient. As someone who appreciates his independence, Kenzo understandably gets emotional when he cannot manage things on his own. Kenzo visits Keech Hospice Care in Luton once a week. The Lifelites-donated Beamz is Kenzo’s favourite item at the hospice. Beamz is an assistive
technology that allows children with life-limiting illnesses to create sounds simply by moving, for example, your hands, legs, or even your head between the sound bars. This easily accessible device allows children with all kinds of special needs to control and create music on their own. Beamz enables Kenzo to create sounds independently, participate in group music sessions, and feel included and engaged with his surroundings. It has helped him relieve his frustration and gain the confidence to create his own sounds. Because Beamz only requires limited movement to trigger a musical response, Kenzo is able to independently control it. Beamz, has given Kenzo a communication tool which allows him not only to be able to join in but also help relieve his frustration. As they only require limited movement to trigger a musical response, Kenzo is able to break the beam to make different instrumental sounds which has enabled
him to gain the confidence to use it independently and empowered him to participate in group music sessions when responses are required. He has also used Lifelites Switches, iPads and touch screen computers, but his favourite Lifelites equipment has to be the football game on the Mobile Magic Carpet and Beamz which he uses every week without fail! Making music on their own gives life-limited and disabled children the chance to express themselves, or to unwind, helping them escape the confines of their condition for a moment. Children in hospice care can also join in with apps on our Lifelites iPads. For example, when reading a book, non-verbal children can make sounds to accompany the story. It give them a chance to make a dog bark, the wind howl or a train screech at it rolls into the station.
Beamz enables Kenzo to create sounds independently and feel included and engaged with his surroundings. It has helped him relieve his frustration and gain the confidence to create his own sounds.
endless energy. This should be the same for life-limited and disabled children, but more often than not, it isn’t possible. Being able to use Eyegaze has given JJ the chance to do things independently for the first time in years, without needing help from his parents or carers. He moves his eyes around the screen to create pictures or select an image. His family and carers were unsure about how much JJ could see, but when he uses Eyegaze, his eye movement increases and he is able to focus on what he is doing on the screen.
Eleven-year-old John Junior (JJ) used to be a lively young boy, able to explore the world and attend a mainstream school. But when he was diagnosed with ALD, cerebral x-lined adrenoleukodystrophy, it meant he suddenly lost his ability to walk or talk. JJ knows what it’s like to run around and play football with his friends. However he gradually lost the ability to see, walk and talk, and is now completely dependent on his family and carers. He suffers from dystonic episodes, which cause his arms to become very stiff. Children are eager to tell their families every thought they have, and run around to burn off their seemingly 8
For JJ, a Lifelites donated Eyegaze has given him the chance to bring creativity and control back into his life. By tracking eye movements with a special infrared sensor, enabling them to move the cursor around a computer screen, it makes it possible for life-limited and disabled children to paint, play games, and communicate, JJ receives Hospice at Home care from his local children’s hospice service, ellenor. Besides
The entire family has lots of fun using the Lifelites iPad where they can take pictures and make videos together, and so create memories to last a lifetime.
JJ enjoys the drumbeats program on Eyegaze, as he used to love playing the drums before his condition deteriorated. His mum said it is wonderful to see his eyes lighting up, and his body changing to be more relaxed and engaged. painting, he enjoys the drumbeats program on Eyegaze, as he used to love playing the drums before his condition deteriorated. His mum said it is wonderful to see his eyes lighting up, and his body changing to be more relaxed and engaged. For JJ’s family, it is a great way to socially interact with him. JJ’s younger brother enjoys watching him use the equipment. The adaptive iPad allows JJ and his brother to play games, create music together or have a laugh. The entire family has lots of fun using the Lifelites iPad where they can take pictures and make videos together, and so create memories to last a lifetime. The Lifelites donated assistive technology gives JJ, - and thousands of children like him - back some of his independence, a new way to engage with his family, and a chance to show them how much he loves them.
The magic that we make Our life-changing technology We reach around 10,000 children every year with our life-changing technology. Because children’s needs are so diverse, we aim to donate a wide variety of assistive technology so every child can escape the confines of their conditions and live magical experiences. Throughout the pandemic, children’s hospices have valued our technologies even more as they connect isolated children with their therapists and carers. Some hospices left technologies with the children at home so they could better play and communicate with their families during isolation.
Mobile Magic Carpet Many life-limited and disabled children will never have the chance to jump into a lake, play 10
carers what they would like to eat or drink, or tell their families that they love them, sometimes for the first time.
football, or have snowball fights. The Magic Carpet gives them a chance to experience activities children usually crave. It is incredibly versatile and turns disabilities into abilities. Some hospices project it on to a large umbrella so children feel like the fish are swimming between them, the snow is falling onto them, or the stars are sparkling over them.
Eyegaze Eyegaze makes it possible for life-limited and disabled children to paint pictures, play games, and communicate by tracking the child’s eye movements with a special sensor. They can tell their
iPad We donate iPads with a drop proof case that makes it easy to hold and is extremely portable so every child can use it. All apps we install help children to play and communicate, making the impossible possible. For example, non-verbal children can read books with their carers and make accompanying sounds. Augmented reality lets them have their own little play world on the floor, table, or in bed.
Virtual Reality The lives of life-limited and disabled children are often stressful. VR has the potential to immerse them in a world of make believe and experience things they might never be able to do otherwise, such as riding a rollercoaster, walking along the beach, or camping.
Instead of Beamz, we now donate Soundbeam. Both are contact free musical instruments which use highly sensitive motion sensors to enable children at any level of cognitive or physical development to be musically expressive. They are great for giving children the ability to be creative in an independent way, reducing isolation and enabling inclusion. It can record the music to create lifelong memories for the family.
POD – a sensory tent in a bag!
Lifelites aims to donate the latest assistive technology to enable life-limited and disabled children to have the best experiences possible. Every second counts for them and their families. The POD, an instantly inflatable Sensory Tent that comes in a rucksack, offers a safe space for children with all types of special needs. It’s portable, light and fun. It’s ideal for these children wherever
care is provided - at a children’s hospice or in their own home. The PODs come with a variety of themes, such as space or under the sea, remote controlled internal lighting and suitable sound effects, with audiobooks for each theme. With enough space for a wheelchair, it becomes a place to hide away. It’s perfect for life-limited and disabled children to immerse themselves in their own world and escape their day-to-day difficulties for a while. In early 2020, we donated our first Sensory Tent for the children of Julia’s House in Poole. Since then, it has been used in many ways and by children of all ages at the hospice. The staff told us it has become a real focus for fun activities - as a chill out zone, or as a safe place to reduce anxiety. For example, they used it for a non-mobile girl who likes to rotate on the floor. The girl was hoisted and positioned on the mat. Then the POD was placed
over her and she was able to enjoy underwater sounds, simulating seaside experiences. The girl spent a long time simply moving around in circles on the floor, safely within the Tent and having a lovely time! Many of these children will never have the opportunity to swim in the sea, snorkel or dive. The POD can give them a taste of these experiences, making the impossible, possible.
Julia’s House also used it for the ‘Hospice Around the World’ theme. They adorned the Tent with bits of fabric to simulate a Bedouin Tent and played Arabian music. It has also acted as a make-believe doctors’ clinic. Staff at Julia’s House said:
‘Overall, the Sensory Tent has been an amazing resource and offers so much versatility! It’s a big thumbs up from all of us at Julia’s House.” In light of the pandemic, the Sensory Tent is ideal to ensure social distancing as one child at a time can enjoy the inside world of the tent. Due to its smooth material, the surface can thoroughly be cleaned. The Sensory Tent is an ideal item to use during Covid-19. Are you a member of a club or community organisation that can help fundraise for a Sensory Tent? Or perhaps you fundraise at work? If you think you can help, please get in touch with Samuel Davies at email@example.com or call 0207 44 4200. 11
Putting Lifelites on the map We work with every children’s hospice service across the British Isles, so wherever you are, there is a Lifelites project near you. Our hospice packages are worth around £50,000 over their four year lifespan, and include the cost of the equipment, installation, staff training, technical support and equipment maintenance. After four years, we will then aim return to the hospice with a brand new package of the latest technology. Here you can see our aspirations over the next four years. Children’s hospices across the British Isles are opening up some of their services again, with new safety measures to protect the already vulnerable children and their families from the Coronavirus. Throughout the lockdown, our helpline has only been a phone call away so we have fulfilled our promise to not only donated, but also provide maintenance and ongoing support for our special technologies.
If you’ d like to donate to us and support any of these projects, please get in touch with us by: Emailing firstname.lastname@example.org Or calling 020 440 4200. 12
Bluebell Wood, Derbyshire
Acorns in Birmingham, West Midlands
Acorns for the Three Counties, Worcestershire
Charlton Farm, Avon Chestnut Tree House, Sussex Claire House, The Wirral Demelza South East London, Greater London Isle of Wight Hospice at Home, Isle of Wight
Acorns for the Black Country, West Midlands
Butterwick Children’s Hospice, Durham
Demelza House, Kent
Claire House, Liverpool, Lancashire
Alexander Devine, Berkshire
Derian House, Lancashire
Helen House, Oxfordshire
EACH Milton, Cambridgeshire
Julia’s House, Wiltshire
Brian House, Lancashire Christopher’s, Surrey EACH Treehouse, Suffolk EACH The Nook, Norfolk ellenor, Kent
Laura Lynn, Dublin
Francis House, Greater Manchester
Forget Me Not, West Yorkshire
Little Bridge House, Devon
Hope House, Shropshire
Haven House, Essex
Jessie May Trust, Somerset
Naomi House & Jacks Place, Hampshire
Julia’s House, Dorset
Martin House, West Yorkshire
Rennie Grove Hospice at Home, Bucks and Herts
Keech Hospice Care, Bedfordshire
Little Havens Hospice and The J’s, Essex
St Oswald’s Children’s Service, Northumberland
Rebecca House, Isle of Man
Rachel House, Fife and Kinross
Noah’s Ark, Barnet, London
Shooting Star Children’s Hospice, Middlesex
Oakwell and Jersey Hospice Care, Jersey
Tŷ Hafan, Vale of Glamorgan
Robin House, West Dunbartonshire
Richard House, Beckton, London
Horizon House, Belfast
The Children’s Trust, Surrey
The Donna Louise, Staffordshire
The J’s, Essex Jersey Hospice Care, Jersey
Zoë’s Place Coventry, West Midlands Zoë’s Place Liverpool, Lancashire Zoë’s Place Middlesbrough, North Yorkshire
Tŷ Gobaith, Conwy
Our community As a small charity, we value our eager and diverse community of supporters. Due to the Covid-19 pandemic, many of our activities had to be re-organised and we certainly miss seeing everyone in person. Take a look at what some of them got up to over the last year, before and during the pandemic:
David Dewitt organised a golf day for Lifelites. L to R: Paul Withams (Lifelites trustee) Mike Hall (Secretary of Rosslyn Lodge), Samuel Davies, David Dewitt (organiser of the Golf Day). 14
Due to Covid-19, the London Marathon was cancelled and millions of pounds in charity donations were lost. In response, the organisers of the event launched the online charity fundraising campaign #TwoPointSixChallenge. Issy and Airlie participated in the sponsoredfundraising campaign ‘2.6 Challenge’ with #Lifelites26hoursTechFree, where they did not use their screen devices for 26 hours to raise money for life-limited and disabled children who need technology to play, communicate and be creative.
Faith joined Lifelites’ Games Day by playing Minecraft to raise money for children who depend on assistive technology to game.
Rock star Rick Wakeman held his fourth seasonal appeal for Lifelites in 2019/20 and exceeded all our expectations, raising £42,785.
Spreading magic she was 22 years old, it was discovered that her only chance of survival was to have a kidney transplant, and that the most likely match would be one of her siblings. Even though her brothers and sister were only 8, 15 and 17 at the time, we went ahead and had them tested to see if they would be a match. Sadly, all three came back negative. We were told that it was highly unlikely that I and my wife would match but we went ahead and had ourselves tested anyway, as this was the only chance our daughter had at survival; if neither of us matched, she would be given just six weeks to live.
John Donoghue is a Lifelites Gold Benefactor. He spoke to us about why he decided to become a Lifelites benefactor by making a regular monthly gift to the charity. “My oldest daughter, Tara, has suffered from Lupus disease her whole life, meaning she has spent a lot of time in and out of the hospital undergoing kidney dialysis. When
I will never forget the day that my wife and I received our test results back. Heartbreakingly, we heard first that my wife was a 0% match, so there was no way she could donate. Then the doctor told us, in total surprise himself, that against all of the odds, I was a 100% match and could donate a kidney to save my daughter’s life. It was after spending time in the hospital and meeting families like mine, who were going through difficulties with their children’s health that I decided I had to stand up and do something important to help.
talk at my Freemasons Lodge. Having had first-hand experience of the unimaginable lives that some of these children lead, I felt it was my duty to help. For the children using hospice services, communication is so often their only hope and that’s what Lifelites gives them, through donating their amazing technology packages. It’s just priceless to see the smile of a child who can communicate with their family for the first time.
Giving £8 a month to become a Gold Benefactor equates to just 26p a day, and would mean the world to some of the most vulnerable children in our society.
I decided to become a Lifelites benefactor after Lifelites CEO Simone came and gave a 15
Become a Lifelites regular giving benefactor The number of life-limited and disabled children is increasing and our work is more needed than ever. By becoming a Lifelites Benefactor, you will be helping to give these children a lifetime.
Where your donation goes Children’s hospice services do not pay anything towards their Lifelites package, so all of Lifelites’ work has to be funded by donations: the equipment, ongoing training and technical support at each children’s hospice service cost Lifelites approximately £50,000 over its four year life-cycle.
The impact of your donation: By giving a regular donation to Lifelites, you will be making a life-changing difference to children and young people accessing hospice services all over the British Isles. Your support could mean that a child is able to say “I love you” to their mum and dad for the first time, using our magical Eyegaze technology. You could give them access to our special iPads, so even they can paint pictures that their parents can proudly hang on their fridges alongside those of their
brothers and sisters. Or you could help to bring out a child’s inner musician as they use the Soundbeam to create and record their own music. For the families of life-limited and disabled children, Lifelites donated technology helps to create memories of the children’s short lives which will be treasured forever.
gic as Create Ma efactor en a Lifelites B
Can you make a regular gift to Lifelites? By signing up to become a Lifelites Benefactor, you will be helping life-limited and disabled children all over the British Isles to play, be creative, communicate and control something for themselves. We need your help to carry on donating not only our magical technology packages, but also the ongoing training and technical support that we provide.
How to become a Lifelites Benefactor ✦ Either visit www.Lifelites.org/ donate and choose regular gift ✦ Or scan the below QR code with your smartphone camera
✦ Up to £3.99 donation per month ✦ Regular updates on Lifelites’ work: Annual Review, Highlites, eNews ✦ Thank you letter ✦ Personalised Bronze Benefactor certificate ✦ Invites to Lifelites’ Celebration at your local children’s hospice service
✦ £4.00 - £7.99 donation per month ✦ All of the Bronze benefits ✦ Opportunity to appear on Lifelites’ social media and website ✦ Opportunity for video or phone chats with the Lifelites team about the impact of our work
✦ £8+ donation per month ✦ All of the Bronze & Silver benefits ✦ Exclusive Gold Benefactor Pin Badge ✦ Or call the Lifelites office on 0207 440 4200. Help us to claim back the 25% tax on your monthly gift by ticking the gift aid box.
Our donations and expenditure The work we do is only made possible thanks to the incredible generosity of our supporters. The support we receive is solely through the generosity of organisations and individuals. Lifelites does not benefit from any government grants or contributions.
The Masonic Charitable Foundation continues their generous donation of office premises and administrative services to Lifelites. This means our overheads are kept to a minimum so we can focus the funds we raise on providing and maintaining our life-enhancing technology. Thank you to our patrons for their continued support: Peter Bowles, The Rt Hon the Earl Cadogan KBE CH DL, Anita Dobson, Jasmine Elcock, Sarah Ezekiel, The Baroness Finlay of Llandaff, Lord Grade of Yarmouth, Robert Powell, Joe Pasquale, Esther Rantzen DBE, Dr Siobhan Thomas, Rick Wakeman, The Rt Hon Lord Young of Graffham DL, Sir David Wootton. A very big thank you also goes to the following supporters who have made a great impact to the children we support during this particularly challenging year: Mark Benevolent Fund, Edward Gostling Foundation, players of People’s Postcode Lottery, The Morrisons Foundation.
Community Groups 49% Charitable Trusts 30% Legacies 9% Corporate 6% Gifts in Kind 2% Individuals 2% Sponsorship 1% Events 1%
Charitable Activities 79% Fundraising & Investments 19% Governance 2%
Please support Lifelites with a donation I enclose a: n cheque n postal order n CAF voucher Please do not send cash Please complete all relevant sections and return your completed form with your donation to: Lifelites, 26 Great Queen Street, London WC2B 5BL
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well as activities and opportunities you may be interested in. Please indicate below if you prefer NOT to receive these postal updates. n Please do not send updates via post from Lifelites Periodically we would like to get in touch with you electronically. Please indicate your preference below. Phone n Yes n No Email n Yes n No Text message n Yes n No
Boost your donation by 25p for every £1 with Gift Aid n I want to Gift Aid my donations to Lifelites (Charity no. 1165791), including donations that I make in the future and have made in the past four years. I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax in the current tax year than the amount of Gift Aid claimed on all my donations it is my responsibility to pay any difference. I will notify Lifelites if I wish to cancel this declaration, change my name or home address, or no longer pay sufficient tax on my income and/or capital gains.
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Lifelites Honours If you would like to make a donation, you could join the ranks of our special supporters who are recognised in the Lifelites Honours Scheme. Why not donate today at www.lifelites.org/donate or by calling 0207 440 4200. In Kind Supporter £10+ Regular Giver £50: Individual Gift £500: Donor £1,000: Supporter £5,000: Sponsor £10,000: Principal Sponsor £20,000: Major Donor
©Lifelites 2020. No part of this publication should be reproduced without prior permission from Lifelites. All information correct at time of printing.
Who’s your friend?
Lifelites Chief Executive
Who’s your friend?’ is a question that I’ve been asking Lifelites supporters, colleagues, and my friends and family, over the past 14 years. We are such a small team, even when we count the dozens of dedicated Lifelites volunteers. More life-limited and disabled children across the British Isles need Lifelites-donated magical technology and many vulnerable children have experienced severe difficulties due to the pandemic, in addition to their already stressful lives. Our donated technology has been vital during isolation, reconnecting children with carers and therapists. Because all our technology is easy to clean, it is ideal to use, despite the virus. To continue to provide life-changing technology to these children using hospice care services, we need more friends. So, who is your friend? One evening, a few months ago, I was at an awards dinner, speaking with a senior manager of a company who knows Lifelites and has supported us for many years. He was enthusiastic in his support and asked what else we needed. ‘Friends’ was
my answer: ‘We need more friends’. After another delicious course and some more conversation, he turned to me and said: ”I have a friend I’d like to introduce you to”. Three weeks later, I was meeting with the chief executive of a major international video gaming company. He agreed with his team they would take on a cycling challenge for the life-limited and disabled children who can’t cycle themselves and raised £10,000 for Lifelites. Imagine that Lifelites is standing alone at a dinner party sometime in the postlockdown future, where you and your friends are enjoying time together. Might you consider asking your friends to support our work so we can help some of the most vulnerable children in our society. It’s always worth asking…”
@LifelitesOrg @Lifelitesorg @Lifelites Tel: 0207 440 4200 Email: email@example.com www.lifelites.org