COVID-19 Special Edition June 2020 - Here for families of seriously-ill children. Always - Sebastian's Action Trust
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Welcome The past few months have been has become #SATstillworking as our #SATstillworking unprecedented and challenging united response to the Covid-19 times. Across the UK, we are all trying pandemic. I am so proud of our to cope with living at a distance from team for being incredibly resourceful, family and friends, perhaps worrying adaptive and proactive. about the health of loved ones and feeling apprehensive about what the One of the greatest strengths of our future holds. charity is the willingness of our people to do whatever is needed and I For many of us, the prospect of a would like to publicly pay tribute to gradual return to life out of lockdown their efforts, each and every day, to is on the horizon, but for the families ensure our ‘family of families’ remains supported by Sebastian’s Action supported. We have worked tirelessly to adapt to a new normal, Trust the pattern of life in isolation is unlikely to change for many months Although our plans for 2020 have ensuring our very own key workers are still able to and possibly not until a vaccination changed dramatically, we are still support our beneficiaries. We have not furloughed is available in 2021. Our current situation is giving us an insight into looking to the future whilst tackling the immediate needs of the ongoing any staff and everyone from the Trust has remained ‘normal life’ for our beneficiaries – crisis. Everyone has a part to play and focused on providing continuing care. the regular separations from loved something to offer Sebastian’s Action ones, the restrictions required to keep Trust so please, join us in whatever immunocompromised children safe way you can. and the emotional and physical effects of living with uncertainty, not being able to plan for the future or imagine how or when matters will improve. Jane Jane Gates OBE Chief Executive Officer Sebastian’s Action Trust In this newsletter, we have reflected on a period of intense activity, changing work patterns and the introduction of new services that flexibly and responsively meet the emotional and practical needs of the families we support. Our strapline Newsletter highlights Still to come: 24-27 INDEX Family services: 3-11 Case studies: 28-29 & 32-33 Fundraising: 12-21 Children’s artwork: 30-31 Communications: 22-23 Life in lockdown: 34-35 2 3 Newsletter - Spring 2019
#SATstillworking “Amalie was mesmerized by the story and was talking to you. When you said you will be back Key workers in action Every week, parcels of emergency Keeping connected another day, she said: how Now, more than ever, our support provisions are delivered across We recognise the extreme pressures on about tomorrow? Then she services have helped to ease the Berkshire, Buckinghamshire, Hampshire, parents who want to protect their children waved goodbye to you stresses faced by our beneficiaries as Oxfordshire and Surrey to ensure families and have adapted our services to respond and Buddy the puppet. they endure life in long-term lockdown. that cannot leave their homes have the to their fears and challenges. Thank you again for still supplies they need. Through innovative changes to everyday trying so hard for all of us”. Life’s little essentials practices, we are still able to connect with Joanna Denton From the onset of lockdown, the and support them as individuals and as “I’m not often speechless, families. We have embraced the virtual families we support have lived in but I’m overwhelmed platform, hosting one-to-one sessions, as enforced isolation, shielding their with the generosity of a well as fun activities that now happen in the “Taking part in the quiz is immunocompromised children from food delivery from SAT. safety of the family home. doing Zaccary wonders. He Covid-19. Recognising the concerns Just having some fresh Until our beneficiaries can once again access isn’t able to see his friends around accessing vital supplies, the vegetables is a godsend all that in normal circumstances we offer at or go to school so is really Trust’s Family Services Team as key as well as other essentials. our flagship facilities, The Bluebells and The missing children his own workers have reduced pressures on Thank you for thinking of us”. Woodlands, we are bringing services directly age. I hear him laughing emergency healthcare givers and the Donna Taylor to them so that we can alleviate feelings of and talking during the NHS by becoming lifelines to everyday isolation, ensure appropriate support and quizzes; they are a great essentials such as food, toiletries, baby build resilience to withstand the uncertainty distraction from anything care, hygiene products and medicines. that currently prevails. that is going on at home. Some of these sessions, offered through It gives him the chance to “Thank you for all you do closed social media and online platforms to feel like a normal 9-year- Sebastian’s Action Trust! We safeguard privacy and confidentiality, have old, and with Tracy as quiz received our food box today and been available to families at home or in master, he has another I am overwhelmed. The boys were hospital, and include: adult totally focused on very excited to receive their Easter him”. • Quizzes and games for specified groups Bernice Garland eggs and I was very excited to see • Storytelling and puppetry actual eggs (no one has managed • Experiments and themed projects to get hold of any around here). All • Relaxation setting for children of you are the comfort and support • ‘Chill & Chat’ Zoom groups for parents we could not do without”. • Competitions and challenges Melanie Rolfe “Have loved the “Thanks Tracy for mad Monday facts! your video call. They have kept Floss loved doing us entertained at the scavenger hunt Great Ormond Street with you!” today”. Felicity Etherington Debbie Garbutt Kamil 4 5
#SATstillworking Flexing our facilities Although the families we support cannot come to our facilities, The Bluebells and The Woodlands have been busy in new guises as COVID-19 has changed how we are able to care for our beneficiaries, with collation and distribution centres for emergency increased need for them to be shielded from the virus, but with play and distraction provisions and activity packs. Adhering to social remaining essential. Play helps a child process what they are going through and distancing restrictions, both sites are used for helps them express fears and frustrations. preparing supplies that are either sent by post or delivered by the Trust’s team directly to the Now we are facing the impact of social distancing and prolonged isolation, as time families’ homes across a five-county region. passes and anxieties grow, the need for connections through play become more vital than ever. Youth Support Worker Tracy Hull has kept our young beneficiaries entertained and stimulated with a range of exciting challenges that bring play and education together. Green finger growing “We have just watched your Encouraging families to take on growing video and made the snake. She is their own produce has also become an now blowing it and then chasing inclusive activity for our families. Youth the bubble snake around the Support Worker Claudia Thompson has garden as it falls off. Amalie loves produced a series of films explaining it! Thank you, Tracy Hull”. Repair and refurbishment work has also taken how to grow fruit, vegetables and Joanna Denton place at both facilities, led by our Facilities flowers, along with seeds and bulbs Manager, Nick Mann. When families are able being sent to children across the UK. to visit once again, the centres will be open to provide the full range of Trust services to our beneficiaries in a safe, private and accessible setting. “Thank you to Claudia for our gardening bits! A helping hand with finance and welfare concerns We’ve been busy Our beneficiaries have endured financial have children with complex medical making lots of mess uncertainty around loss of anticipated conditions, who are shielding because and look forward to income and future employment, but with of their seriously-ill child’s needs. Some watching them all the added complexity of knowing that for parents are also key workers and are grow”. them the ease in restrictions will not end concerned about how the situation Hannah Hunt soon. As many are expecting to remain in could affect them financially. isolation for some time, consideration of I have also liaised with various long-term home schooling has become a local authorities to revise individual Keeping kids active significant issue for those who worry about Education and Health Care Plans so Youth Support Worker Samantha “Thank you so much Sebastian’s protecting their immunocompromised that families can access their own Lusty has brought smiles and Action Trust for all our lovely children from Covid-19. personal budgets and organise carers entertainment to 1,000 children goodies, I really appreciate your to provide schooling for their child across the UK with the Trust’s help in keeping Charlotte busy. It The Trust has been inundated with that can be done in the safety of their activity packs. Receiving a really does make such a difference requests for guidance and advocacy. home, without having to go back to parcel with a personalised note in these difficult times. You are Fehmida Azmi, Trust Finance and Welfare school. These are uncertain times for has proven to be a fantastic all working so hard looking after Support Worker, explains: everyone, but for families trying to mood elevator for our young everyone in various ways. You have “When businesses started furloughing support their seriously-ill child while at beneficiaries, who are not able to been a lifeline to us; really not sure staff, I was contacted by parents asking home, the uncertainty over their future enjoy exercise or activities outside we would have coped without you”. for guidance to support their furlough could last a lot longer”. of the family home. 7 Karen Walling 6 request to their employer. Many parents
#SATstillworking Our year at a glance Ensuring loss is not in isolation of Covid-19 have meant that many Last year (1st April 2019-31st March 2020), we Tragically, five children from the Trust’s bereaved parents’ buoyancy aids have been washed out to sea, leaving provided holistic care services enriching the ‘family of families’ died in the first them trying to navigate through this lives of 605 families, with a further 60 successfully five weeks of lockdown. The Trust’s challenging time with minimal help, transitioned out of our services, which is an Bereavement Support Workers Philippa feeling disorientated and exhausted increase of 13% on the previous year. King and Catherine Norris have ensured COVID-19 has certainly affected delivery of continuity of care as a constant, albeit emotionally”. services, with some aspects such as respite virtual, presence to these families breaks and day visits stopping completely in throughout the early weeks of grieving. March. Philippa explains: “Having someone to talk to “When a child dies the grief that parents about how I’m feeling with my Our support included: have to cope with does not run a linear grief is invaluable. Talking to line to recovery. The feelings, emotions Philippa always makes me feel and thoughts they experience are like lighter. I never thought I’d need 4,366 hours of outreach and specialist care, the sea. There are calmer moments a service like bereavement providing emotional, social and practical when parents can take their shoes off counselling but being part support at home and in hospital. and walk gently along the shore, grateful of the ‘family of families’ is a for some quiet time to catch their breath – to reflect and remember. The effects lifeline for me”. 181 events, activities and workshops benefitting 3,189 participants, helping to Kate Mellor create friendships that will last a lifetime. through a virtual platform that 1,103 beneficiaries accessing facilities and will connect 1,200 seriously-ill and support at The Woodlands. disabled children and their parents across the UK. In the week leading up to the party, every child will receive 85 respite breaks for families and 471 day a gift tailored to their needs, together visits to The Bluebells. with decorations, games and craft materials – building anticipation and Walking alongside 123 bereaved families, Festive fun….in July increasing participation. It will bring with 1,014 hours of face-to-face support to Not even a global pandemic can families together, giving them the ‘Butterfly’ parents and siblings. hinder our determination to bring chance to make memories and feel ‘family of families’ time and memory part of something special. making to our beneficiaries. Event 3,602 phone calls, emails and virtual sessions planner Amy Samuel has been offering emotional and practical support. preparing for her biggest challenge yet - a virtual Mad Hatter’s Tea Party to celebrate Christmas in July. On the 12th July, we will host the annual Christmas in July party, the flagship event in our calendar, 8 9
#SATstillworking 24th March 1st April 14th April 4th May SAT transitioned to working We attended our first virtual funeral The Woodlands becomes the hub for Covid-19 emergency from home. The Bluebells and following the death of a child collating activity packs for 1,200 children funding granted by the The Woodlands are closed to supported by SAT. supported by the Trust across the UK. Oxfordshire Community all visitors. Foundation. 2nd April 16th April 26th March Supermarkets such as Waitrose We begin hosting our regular ‘Chill & Chat’ 7th May Support for families continues and Morrisons begin supporting our group activities by Zoom, spanning the UK. Covid-19 emergency via phone calls, texts, emails emergency provisions appeal with funding granted and setting up virtual one-to- donated products. 18th April by National Lottery one’s via Zoom. The Bluebells becomes our hub for Our Patron James Haskell and his wife Chloe Community Fund – Closed social media groups collating emergency food provisions Madeley host a 12-hour Instagram live Awards For All.. are established for secure ahead of delivery across five fundraiser for SAT. use by our beneficiaries and counties. 12th May virtual youth support begins 20th April Work begins on with our first group ‘tune in 4th April We launch our first virtual Christmas in July redecorating The with Tracy’ session. X Factor stars Max and Harvey host party - to take place on the 12th July. Bluebells, ahead of a 24-hour Instagram live fundraising an intended gradual 27th March event in aid of SAT and Royal 26th April reopening in July. Our first emergency food Manchester Children’s Hospital. 14 fundraisers embark on The 2.6 Challenge in parcel is sourced, collated aid of the Trust. 14th May and delivered to a supported 5th April Relax and recharge family in need. Our CEO, Jane Gates OBE featured 27th April packs are introduced for on BBC Radio Berkshire to highlight the The Trust receives the first grants for Covid-19 parents, for distribution 28th March work of the Trust in lockdown. emergency funding from the Hampshire and to all supported parents #SATstillworking is introduced Isle of Wight Community Foundation and over the next 3 months. as our strapline at the end of 7th April Heart of Bucks. our first week in lockdown. Community engagement becomes 29th May ‘Annie’s Army’ of donors, giving goods 29th April Reckitt Benckiser (RB) 30th March that are added to our emergency The Trust is featured on ITV Meridian news, through Berkshire provisions. highlighting our work during lockdown. Community Foundation Apr Youth Support Workers April Samantha and Claudia begin grant is awarded. creating activity packs that are sent to children supported il 30th May We are featured on by SAT across the UK. BBC Radio Berkshire to introduce our Christmas c h M in July campaign. a r ay M 10 11
#SATstillworking Emergency action We have been flexible, responsive and adaptive to meet the changing needs of our beneficiaries. In the first two months of lockdown we have provided: 384 emergency provisions packs to meet the basic needs of some of our most vulnerable families. Fundraising to keep #SATstillworking 787 children’s packs to alleviate boredom, inject some fun and stimulate engaging COVID-19 has had a devastating activity. impact on fundraising, but in spite of the tremendous challenges posed by 257 video and phone calls to keep the lockdown and restrictions we have witnessed incredible community spirit, connected. generosity on an unprecedented scale and some brilliant new initiatives to 260 youth support sessions to bring isolated support our cause, knowing it will directly children together. help our beneficiaries. 50 counselling sessions to provide a listening #SATstillworking emergency space in a safe and private setting. appeal From the onset of lockdown we 278 sessions of bereavement care, recognised that ensuring families because grieving and loss cannot be shielding immunocompromised children confined, especially in lockdown. received vital supplies was a function we could undertake. From the story The appeal is still ongoing as we 23 virtual group events and activities. of Nancy Rockell, featured in this newsletter, we launched a campaign continue to support hundreds of beneficiaries with these packs. More highlighting the plight of so many families than £11,400 has already been In the first ten weeks of lockdown, we who could not venture out to obtain donated through this appeal, which provided 6,120 hours of support to our food, toiletries, hygiene products, baby remains open at care and medicines. Critically, many of beneficiaries across the UK. them struggled to obtain priority home https://www.justgiving.com/ delivery slots too, so our emergency campaign/SATstillworking provision packs quickly became literal lifelines. 12 13
#SATstillworking Instant success with Instagram A team of teams for The 2.6 Following a successful shout out to Challenge X Factor: Celebrity stars, Max and Fourteen fundraisers from the Trust’s Harvey, the dynamic duo hosted a staff, volunteers, trustees, supported 24-hour livestream in April in aid of families, corporate partners, schools our charity and the Royal Manchester and community groups rose to their own Children’s Hospital. Donations were challenges on the 26th April to take part given by listeners hoping to be in The 2.6 Challenge, an initiative aimed mentioned or interviewed during at raising funds for charities on the day the live event, with 50% of the £9,425 the London Marathon should have taken raised donated to the Trust. place. Challenges included performing 26 activities in a single day, a quiz night, cake baking, walking 26,000 steps in a single day, running 2.6 miles in 26 minutes, delivering bags of books to 26 different destinations, computer gaming, a management team challenge and even walking the marathon distance in a day. Together, The 2.6 Challenge raised in excess of £9,800 for the Trust, with an element of match funding still to come. A fortnight later, the Trust’s Patron Joe Mahler, Owen Farrell, Will James Haskell and his wife Chloe Greenwood and Billy Vunipola, as “I really enjoyed taking on The Madeley hosted ‘At Home with James well team mates from his recent stint 2.6 Challenge for Sebastian’s and Chloe’, on Instagram live to raise in the ‘celebrity jungle’, including Action Trust. Running 2.6 funds and awareness of the vital work Roman Kemp, Jacqueline Jossa, Adele miles for 26 days gave me of the Trust. Roberts and Nadine Coyle. Chloe’s something to focus on whilst in father, TV presenter Richard Madeley, lockdown. I have had a lot of Dylan Hartley and footballer Adebayo support from family and friends Akinfenwar generously donated items and by doing the challenge, it for auction, which together with online has really helped me keep in donations, raised £15,000 for the Trust. touch with them all!” Pat Hurst The event featured sessions with many of James’ connections from his sporting career such as Dylan Hartley, Mike and Zara Tindall, Chris Robshaw, 14 15
#SATstillworking Let there be cake Ascot resident Piumie De Alwis has been using her baking talents to A community of givers bring tasty treats to many of our Over the past few months, the kindness and isolated families. Piumie has been generosity of so many who wish to help us keep baking and decorating hundreds our ‘family of families’ safe, supported and of cupcakes, distributed to families connected has been overwhelming. across Berkshire, Hampshire, Surrey and Buckinghamshire. Some of the examples of extraordinary efforts include: • Bagshot and Sunningdale branches of Waitrose have donated plentiful supplies of groceries, which have been a tremendous help especially in the earliest days of lockdown with the scarcity of supplies. • Basingstoke and Farnborough branches of Morrisons have similarly donated food, hygiene products and baby care items that have been a lifeline to families. • Healthcare company Glaxo Smith Kline Annie’s Army donated hundreds of tubes of toothpaste, Around Ascot local residents’ groups an essential item for oral hygiene at a time and businesses have been getting when dentists cannot offer their services. behind the Trust’s community • Irwin Mitchell Solicitors donated vital hand fundraiser Annie Hoddle by donating sanitiser, which has been a lifeline not only tins, packets and boxes of foodstuffs for our key workers delivering emergency that can be added to the weekly provisions but also for our beneficiaries emergency provisions our key workers who have struggled to obtain supplies are delivering to some of the most elsewhere. vulnerable families in society. Very • Sports performance food company, quickly, ‘Annie’s Army’ has become Grenade, donated hundreds of protein a fantastic force for good, enabling bars for distribution to beneficiaries who a community to come together in are trying to keep themselves fit to cope support of Sebastian’s Action Trust. with the physical strains of caring for a disabled or mobility restricted child. • Sensitive toiletry brand Childs Farm donated soaps, shampoo and skin care products for our beneficiaries. • The exclusive Berkshire hotel Coworth Park donated bags of baked goodies for children in isolation. 16 17
#SATstillworking We have been overwhelmed by the support and donations from our corporate supporters that have enabled our charity to provide emergency practical and emotional relief to hundreds of families. Emergency funding At a time when we have not been able to rely on our planned programme of fundraising events and activities, the support of charitable foundations has been crucial to the delivery of our Covid-19 emergency work. We are grateful to each Funding boost from LEGO Group of the trusts and foundations listed below which have responded so quickly to our It is thanks to a wonderful grant from our applications for funding with such positive endorsements of our efforts: corporate supporters at the LEGO Group that we have been able to deliver more Funder Award Purpose than 1,000 bespoke activity packs to seriously-ill children and their siblings, Hampshire and Isle of Wight £10,000 COVID-19 in providing opportunities for fun, play- Community Foundation Hampshire based learning and creativity during lockdown. Heart of Bucks £5,000 COVID-19 in Sebastian’s Action Trust submitted an Over the last two months our Family Buckinghamshire application to help fund the supply and Services team have been working delivery of our activity packs in March, hard putting the activity packs to- Oxfordshire Community £3,538 COVID-19 in following an announcement by the gether to help lift the spirits of children Foundation Oxfordshire LEGO Foundation and the LEGO Group who are facing months in isolation, to donate US$50million, worldwide, to away from their friends and family National Lottery Community £9,660 COVID-19 address the critical needs of children and unable to enjoy activities outside Fund/Awards For All during the COVID-19 pandemic. the home. Shanly Foundation £2,000 COVID-19 The aim of our initiative was to urgently Each activity pack is tailored to reach crisis-affected children with the specific needs of each child, The Prince Philip Trust Fund £2,000 COVID-19 in Windsor essential supplies and provide support with the aim of providing them with to continue learning, while they were at opportunities to have fun, learn and and Maidenhead home in isolation, through play. boost their resilience. Reckitt Benckiser (RB) £10,000 COVID-19 in Berkshire through Berkshire Bristol Myers Squibb donates £12,000 towards emergency Community Foundation provisions packs We received an incredible £12,000 baby care products, toiletries, from global biopharmaceutical nappies, antibacterial sprays and company Bristol Myers Squibb to help other essentials to their homes. fund emergency provisions packs that Information about our appeal was we are supplying to the vulnerable shared with the company’s employees families we support who are doing all who kindly donated £2,000, which Bristol they can to keep their loved ones safe Myers Squibb very generously boosted by staying at home. with a further donation of £10,000. These Shortly after the UK went into lockdown, emergency provisions packs continue we launched a fundraising campaign to make a huge difference to families to provide emergency practical and are a lifeline for parents shielding support to help keep our families their immunocompromised children safe and nourished by supplying and from COVID-19. delivering vital supplies including food, 18 19
#SATstillworking How you can help Individual philanthropy Donations from our generous supporters have enabled us to provide emergency Large donations and major gifts from support, as well as crucial emotional support, to hundreds of our families who are individuals help Sebastian’s Action currently in enforced isolation at home. Trust ensure every one of our children, Sebastian’s Action Trust is still at work, supporting vulnerable families each and young people and families receives every day, but as we are unable to initiate our own fundraising efforts at this time, the best possible care. we remain entirely dependent upon the generosity of our supporters. The relationships we enjoy with our We know that everyone’s lives have been affected by the COVID-19 pandemic, major donors are deeply personal; but any donation you are able to make will help us support even more of society’s they are partnerships which have most vulnerable families. been tailored to an individual’s Easyfundraising Another way to make a donation philanthropic aims. by shopping online is through You will be asked which areas of our 50:50 Club Lottery Easyfundraising – the UK’s biggest work you would like to give to and will By entering our 50:50 Club Lottery charity shopping fundraising site. be regularly updated on the impact you have a chance of winning a Choose our charity as your good your support is having. generous cash prize every month – cause, then continue to shop as As a major donor, you will have a at the same time as donating money normal at any of the nearly 4,000 significant and enduring effect on the to the Trust. For £5 per month you well-known retailers in their network, services we are able to provide to our will be allocated your own unique including Marks & Spencer, Argos, families – as well as helping to secure number; the more unique numbers John Lewis, Ocado and eBay. vital income that will shape our future. you buy, the greater your chances of winning. Whenever you purchase an item, the Half of the lottery proceeds go retailer will send us a small donation to towards supporting the work of the say thank you. For example: Trust, whilst the other half is retained as the prize fund which is shared AmazonSmile Make a regular £5 per month could go towards providing craft between the lucky winners. supplies for our children’s activity packs. AmazonSmile is a website operated by donation Amazon with the same products, prices You can give as much and shopping features as Amazon. or as little as you are £10 per month could pay for a present for a child co.uk. able and be certain at this year’s virtual Christmas in July party. Once you have opened an account that every pound you with AmazonSmile and selected donate helps our cause. Sebastian’s Action Trust as your chosen Regular donations make £20 per month could go towards the cost of a big difference to providing our emergency provisions, which include charity, Amazon will donate 0.5% of the Sebastian’s Action Trust food, toiletries, antibacterial spray and other purchase price to the Trust every time in so many ways. necessities for vulnerable families who are isolated you shop. at home. To ensure your donation goes to Sebastian’s Action Trust, always start To set up a regular donation, please go to our website your online shopping at smile.amazon. www.sebastiansactiontrust.org and click on the co.uk rather than the main Amazon donate button. website. To get involved please contact us on (01344) 622500 or To get involved please contact us on (01344) 622500 or fundraising@sebastiansactiontrust.org 20 fundraising@sebastiansactiontrust.org 21
#SATstillworking For our families, we have The effects of the COVID-19 Over the past two months, we adapted our support services pandemic have obliged us to have worked hard to further to meet their changing needs; adapt to new ways of working and enhance the way in which we we have created two new communicating, whilst at the same communicate with our supporters closed social media groups time continuing to raise funds to and families via social media; for referred children and their support our cause. sharing stories about our ongoing siblings, enabling them to support for some of society’s most socialise with others with the For many of the families who are vulnerable and isolated families in aim of reducing feelings of supported by the Trust, or individuals order to raise awareness of, and isolation. and organisations who support our funding for, our emergency work. cause, communicating solely via online platforms has become a way Social media is one of the most of life. effective ways for charities to create a network of supporters, boost donations, share stories and demonstrate the impact of their work. As the pandemic has temporarily suspended many of our more traditional methods of fundraising, we have been busy finding new ways of generating income The wonderful pictures, messages For many of our families through social media, which and videos they have posted online currently in enforced lockdown, have raised thousands of pounds have been shared on our main communicating with the outside and also exposed our charity to a social media platforms to highlight world online will remain their main brand new audience. to our followers just how important way of socialising and working for our continued support is to families’ what is likely to be many months to mental health and wellbeing. come. We have also employed more traditional methods of /SebsActionTrust communication during the Social icon COVID-19 pandemic to raise Circle Only use blue and/or white. For more details check out our Brand Guidelines. /SebsActionTrust awareness of our work in the form of newspaper, radio and TV coverage. /SebsActionTrust Trust staff have also had to adapt /Sebastians-Action-Trust to new ways of working and have been working from home and /SebsActionTrust communicating with each other 22 via Zoom. 23
#SATstillworking Virgin Money London Marathon One of the largest sporting events in the world has been postponed and is due to take place on Sunday, Still to come for 2020… October 4th 2020. ‘Bas Bits & Bobs’ is Sebastian’s Action ‘Bas Bits & Bobs’ – supporting Trust’s second shop. Our preloved Thousands of participants are due Sebastian’s Action Trust bookshop, ‘Bas Books’, is in Princess to run past some of London’s most Square Shopping Centre, Bracknell. iconic landmarks, including Tower We are excited to share with you our Bridge, Coca-Cola London Eye and plans for a new shop in the Kennet If you are looking to declutter your the Tower of London, before crossing Shopping Centre, Newbury. home while in lockdown and have the finishing line at The Mall outside some items you would like to donate Buckingham Palace. ‘Bas Bits & Bobs’ is due to open in late to our new shop, please contact: summer 2020 and will sell a range of Lorraine@sebastiansactiontrust.org Ballot places have already been preloved, good condition, house- allocated, but we would love to hold furniture and books. *We are unable to accept electrical hear from you if you have a place items. for this year’s event and are yet to choose a charity to support. Virtual Santa Fun Run Set yourself a personal challenge The lockdown restrictions have Following the success of our first motivated people to become more virtual Santa Fun Run last December, creative with their ideas to keep fit we have decided to organise a and active, while remaining safe at second virtual Santa Fun Run for home. 2020. We have been encouraged by Pick your chosen route; it could those supporters who have raised be around your local park or take thousands of pounds for Sebastian’s inspiration from Sir Tom Moore and Action Trust by setting themselves complete laps around your back various personal challenges or have garden. Anyone can join in. Ask been fundraising in other ways. friends, family and neighbours to sponsor you and raise as much as At the time of writing this newsletter, you are able for Sebastian’s Action local sporting events like the Trust. Bracknell Half Marathon (27th Sept), Basingstoke Marathon (4th Oct) and Reading Half Marathon (1st Nov) are still scheduled to take place. If you are interested in taking part on behalf of our charity, there is still time to train and we would love to hear from you. Please contact: LouiseL@sebastiansactiontrust.org who can give you fundraising advice 24 and supply you with a running vest and sponsorship material. 25
#SATstillworking £25 It costs per child to bring the magic and sparkle of ‘Christmas in July’ to families and we are inviting you to be part of this ‘Christmas in July’ is Sebastian’s Our families tell us ‘Christmas in July’ amazing occasion. Action Trust’s flagship event – is THE occasion they treasure the bringing our beneficiaries together most and we hope this year’s virtual to have fun and make precious party, the biggest yet, will lift their A £10 donation could pay for memories. spirits and create memories that last a child to receive a present from a lifetime. Father Christmas. It is particularly special for some of our families whose children may Last year’s event was held at Ascot not live to celebrate Christmas this Racecourse and was a spectacular A £15 donation could pay for coming December. afternoon. We are thrilled that Ascot a gift bag of small treats for five Racecourse will once again be children. The COVID-19 crisis means that involved, helping us to make sure ‘Christmas in July’ cannot take place ‘Christmas in July’ 2020 is just as A £50 donation could pay for this year in its traditional format, so memorable. cake toppers to be sent to more we will be hosting the party online, than 600 families prior to the connecting 1,200 seriously-ill children The three-hour online party, with event. and their families. a ‘Mad Hatter’s Tea Party’ theme, will feature a concert, circus acts, a Here are some virtual fundraising ideas: farm tour, interactive entertainment • Host your own ‘Mad Hatter’s Tea and much more. Party’. Invite family and friends to join you online for tea and cake; suggesting a donation to attend. • Arrange a quiz night via video call; every team makes a donation to enter. • Organise a ‘Christmas in July’ bake off challenge. Encourage your friends, neighbours and family to bake anything they like, ask for a £5 donation to enter and share a photo of their creation so you can choose a winner. • Go for a sponsored walk in a Santa suit – you choose the distance. Donations can be made via our website www.sebastiansactiontrust.org or alternatively, set up a fundraising page at https://justgiving.com/campaign/christmasinjuly Cheques should be made payable to ‘Sebastian’s Action Trust’ and be sent to: Sebastian’s Action Trust, The Woodlands, Upper Broadmoor Road, 26 Crowthorne, Berkshire, RG45 7FN. 27
#SATstillworking At Sebastian’s Action Trust, we are a ‘family of families’, supporting each other together. Nothing highlights this more than our wonderful beneficiary Aaron, who has been lightening the mood of our families during lockdown. Aaron decided to create a funny and engaging video series ‘At Home with Aaron’, to bring some joy and happiness to other children and Aaron has Emery-Dreifuss muscular young people who are supported dystrophy – a condition that primarily by Sebastian’s Action Trust and affects muscles used for movement are isolated at home due to the and the heart. He is physically COVID-19 pandemic. limited on what he’s able to do and because of his condition he needs to His ‘At Home with Aaron’ videos be shielded from potential infection. feature fun activities, funny stories, He wants to keep busy while he’s quizzes and magic tricks and are at home and is really enjoying the shared with families via social media activities and interactive quizzes the “Claire, Aaron’s Family Support Worker, on our new closed youth group. charity’s Youth Support Workers are often calls to see how we are, how putting up online.” we’re coping with being at home, and Aaron’s mum Julie, said the video if there is anything we need. It’s very series had given her son something Julie is also finding it challenging living reassuring to know someone else is positive to focus on while he is at in lockdown and finds the remote thinking about the welfare of you and home and unable to socialise with Julie said: “He’s always loved making support the Trust provides for parents your family. friends and family. videos and is really enjoying working a godsend. on the episodes of ‘At Home with I joined the virtual ‘Chill and Chat’ Aaron’, coming up with different ideas online session the other week; it was he thinks other children will like. He’s nice to see other parents, talk about had some lovely feedback from other what we’ve been doing and be there families which is really nice. for each other. Sebastian’s Action Trust is our contact with the outside world. Aaron is missing social interaction and Their support has been a lifeline and being able to go out and about. Before we know they will always be there for the lockdown restrictions, we attended us at the end of the phone if I want to Sebastian’s Action Trust’s activities and talk about anything and also for Aaron events and often visited The Bluebells to keep his spirits up and engaged with and The Woodlands. We can’t do that other young people his age”. at the moment and probably won’t be able to for a while. 28 29
#SATstillworking Children’s Artwork Here are some of the wonderful pictures that children from our ‘family of families’ have created while at home during lockdown. #FamilyofFamilies 3030 31
#SATstillworking Four-year-old Nancy Rockell was readmitted to hospital on May 14th due to a persistent fever that was making her feel increasingly unwell. Nancy had received open heart surgery in March, just before the UK went into lockdown, and had been recovering at home with her family, when her parents noticed her high temperature was not coming down, despite their best efforts. Nancy was taken into Frimley Park Hospital and following various tests was able to return home eight days later. A couple of weeks ago, Nancy underwent further surgery at the Evelina London Children’s Hospital “It was such a scary time. Now she’s and finally returned home to her at home, a nurse comes in to give her family on May 28th. antibiotics every morning and she’s Our Family Services Team, our own key Everybody has been absolutely getting better but still needs further workers, continue to support Nancy’s amazing. There is a real sense of Kirsty said: “Nancy had only been tests. Her brother Oscar was so worried, family remotely via phone and video family; everyone gets involved and it’s out of hospital for a short time when especially as his little sister has just calls. They have also received our incredible. we noticed her temperature spike; come home from hospital following emergency supply packs, containing despite regularly giving her Calpol, it heart surgery. He literally ran out the antibacterial sprays, toiletries, Oscar has been struggling with anxiety wasn’t going down. We decided to door to greet us hugging and crying essentials and food to keep the whole because of Nancy’s illness and before take her into hospital where she was as soon as we arrived home”. family safe and nourished. his school closed due to the lockdown, admitted for nearly a week. his Youth Support Worker Claudia Since returning home, parents Kay and Our Youth Support Workers have would visit him at school and provide Kirsty have been doing all they can been engaging with Nancy and one-to-one support to help with his to keep Nancy, Oscar and younger Oscar through online activity sessions emotions. brother Reggie shielded and both children have received from the potentially fatal personalised activity packs with arts, She has carried on supporting him COVID-19. Like many crafts and toys to keep them busy. via regular video call. The difference of our beneficiaries this continued support has made to whose children have Nancy’s mum, Kirsty, said: “Sebastian’s him has been incredible. Sebastian’s compromised immune Action Trust is doing everything it can Action Trust is amazing and always systems due to their life- to support us at such an uncertain goes above and beyond”. limiting or life-threatening time and we are far more supported condition, Nancy and her by the charity than by anyone else. Sebastian’s Action Trust is still at work, family will continue to live in supporting vulnerable families each complete lockdown for the and every day. foreseeable future. 32 33
#SATstillworking “Many thanks to all of you at SAT for our parcel today. Louis was delighted to have another Life in lockdown has been an extremely challenging time for our families, who have no idea how or when their normal way of life will return. Sebastian’s Action one of the jelly baths. We really enjoy opening Trust continues to support families during such an unprecedented time and will up the parcels and discovering all the treasures continue to be there for families. Always. carefully selected by you for Louis, Robin and Adele. Thank you for everything you do for us. “My befriender, Fiona, would usually come to the house once a Not all heroes wear capes”. week to help look after my two-year-old triplets. My little boy Oscar Marion Barnes has cerebral palsy, impaired vision and other health problems so an extra pair of hands is always helpful. It’s been really difficult not being able to access the practical support from Fiona since the lockdown but it’s very important to me to know she’s at the other end of the phone. She calls me once a week to see if there is anything I need and the support is always there”. “Thank you so so much for our “ food hamper this week. Makes ” Kim Davy shielding so much easier for us, and there were some lovely treats - the cupcakes are amazing! Thank you”. Nicola Flynn “Thank you so much for Amelia’s goodies. She was delighted to “Life in complete isolation has been receive them. Thank you to all at so difficult with just me and the SAT who are continuing to work so two boys - relying on family and hard to support us”. supermarket delivery slots. Then just Fiona Bate when it helps the most, Carla from Sebastian’s Action Trust arrives at my door, out of the blue, and delivers “Mark loves receiving his seeds the most amazing supplies that will from Claudia; she knows Mark is see us through for another few days. a keen gardener and regularly Honestly, thank you from the bottom visits the gardening club, which of my heart SAT”. he is missing, so being able to Sonia Millsom plant seeds out in the garden or even in a jar on the window sill is great. Many thanks to Claudia”. Julie Newman 34 35
2020 Calendar of events Bas Bits & Bobs Summer/ Opening of ‘Bas Bits & Bobs’, preloved household furniture shop, Autumn The Kennet Centre, Newbury. 2020 See page 22 of this newsletter for further details. To donate good quality, second hand household furniture, contact: Lorraine@sebastiansactiontrust.org Charity Golf Day Sep Royal Ascot Golf Club, Winkfield Road, Ascot 11.30am arrival, ready for a shotgun start at 12.30pm. 11 Entry is £80 p.p. Corporate packages and opportunities to sponsor a hole are available. Contact: fundraising@sebastiansactiontrust.org Virgin Money London Marathon Oct October 4th is the rescheduled date for the Virgin Money London 4 Marathon. If you have a ballot place and are interested in raising sponsorship for our charity, please contact: LouiseL@sebastiansactiontrust.org Oct The Coworth Park Lunch 21 Coworth Park, Ascot, SL5 7SE Tickets £55 p.p Drinks reception, 3 course lunch and guest speaker. Dec Santa Fun Run Ascot Heath, Ascot Racecourse, 10:30am 6 Entry fee and distance: TBC Price includes a medal and santa suit. Dec Virtual Santa Fun run Choose your own route, dress up in a Santa suit or decorate 6 yourself in tinsel and encourage your friends, neighbours, family and colleagues to sponsor your challenge or join in. Contact Us /SebsActionTrust T: 01344 622500 E: info@sebastiansactiontrust.org /SebsActionTrust www.sebastiansactiontrust.org /SebsActionTrust Many thanks to Nick Riches and Danny Feasey Photography /Sebastians-Action-Trust Sebastian’s Action Trust, The Woodlands, Upper Broadmoor Road, Crowthorne, RG45 7FN. Sebastian’s Action Trust is a registered charity and a company limited by guarantee. Registered Charity No. 1151146 Registered Company No. 8339436
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