Into our Into th th year Always. children. seriously-ill of families for Here
Spring 2018 NEWS Issue 27 15th Anniversary issue Our story
From one little boy’s last wish, over 15 years, great things have come.
In December 2003, our founder from a geographically defined area care ensuring families can continue to Sebastian looked beyond his own battle in the south of England, but a national access the care they need at critical with cancer and impending death to demand for the services we offered times. Additionally, our calendar of 75 outline his wish for a place where other soon became apparent. In the last six events per year help children, parents, children facing a similar outcome could and a half years, 717 breaks have given extended family and carers to form escape with their families, to spend time families from 39 counties of England, strong bonds with peers, contribute to together away from hospital with respite Scotland, and Wales* much needed a knowing community and demystify from punishing, relentless treatment and time at The Bluebells, with many also the concept of difference. Core to our the roller coaster of unpredictable life. benefitting from the ever-expanding ethos is the desire to ensure families feel Sadly, Sebastian did not live to see the outreach and specialist services we less isolated, appropriately supported realisation of his last request, so it fell to now offer. Demand for our support and sufficiently resilient to meet the his family, friends and local community continues to rise and to this end we challenges they face. We know we to draw strength from the inspiration begin 2018 with an exciting new project can’t add days to lives but we can, and of a nine year old’s experience and to replicate The Bluebells, our flagship do, add life to days. From a grass roots wisdom, to create something unique. facility, at our newly acquired site, charity established from the simple The Woodlands, in Berkshire. vision of our founder, we remain proud Years of fundraising culminated in the to be here for our families. Always. opening of The Bluebells in July 2011. Sebastian’s Action Trust continues to This was a significant milestone for the evolve, providing a holistic model of Trust; without any statutory funding we care that recognises each person as designed, constructed and funded an individual as well as the collective the creation of the UK’s only purpose- family unit. In response to need, we built facility providing respite breaks have seen our outreach services extend exclusively for families of children across Hampshire, Surrey, Berkshire, with life-limiting or life-threatening Buckinghamshire and Oxfordshire, with conditions. From the outset, the aim additional specialists in child support, Sebastian’s mummy was to offer respite breaks to families finance and welfare, and bereavement & CEO of Sebastian’s Action Trust *Figures correct as of February 2018
Page 2 Our vision We passionately believe all families of children and young people in the UK with life-limiting or life-threatening conditions should be able to have quality time together The Bluebells is a unique respite home enabling families to spend to relax, recharge and rebuild, never having to face life precious time together alone and ensuring that lives are lived to the full.
Our mission is to support such families Receiving the news that a child is from the point of a child’s diagnosis, seriously ill or profoundly disabled and throughout treatment and beyond may die before reaching adulthood by listening and responding to their is devastating. A family’s world is unmet needs. turned upside down and knowing what to do or how to access help We understand that the experience of can be overwhelming. Families need every child and their family is unique. continuing care throughout their With more than 400 different conditions child’s life – for as long as that may that affect children and young people, be. Crucially, they will continue to Families have a dedicated outreach worker Christmas in July is one of our annual events diagnosis can happen at different need support after their child’s death, enjoyed by many of our families stages. Some children will live a matter through their grief and loss. of moments; others will live into young adulthood. Some will have familiar Sebastian’s Action Trust is here to conditions such as cancer and muscular ensure that every one of the children, dystrophy, whereas others will have young people and families we support genetic or metabolic conditions so rare gets the best possible care. We are they have no name. Our beneficiaries proud to walk alongside our families often have complex conditions requiring through the good days, the bad, and specialist care and services, and families everything in between. For as long as invariably need assistance to meet their each beneficiary wishes, we remain child’s round the clock care needs. a constant in a world that presents endless challenges and uncertainties.
An annual Remembrance Service is one of the Finance and Welfare support and guidance ways we walk alongside bereaved families is vital for many of our families
15th Anniversary issue Page 3 A walk through our history...
2003 2004 2005 2006 2007 2009 2010
8th December June Our psycho-social Our wellbeing support Our advice, Our bereavement February On his way to an Sebastian’s Action support began with began with providing guidance and care expanded to Family, friends and operation, our Trust becomes a a three year funding complementary advocacy support offering activity days volunteers helped founder Sebastian registered charity commitment for the therapies and began with the for bereaved siblings to mark Sebastian’s Gates outlined his first dedicated clinical pampering to parents provision of 16th birthday by last wish for a place psychologist at the and children at Wexham mobile resource breaking ground on for families where John Radcliffe hospital, Park hospital, Slough libraries at Wexham what was to become families could escape Oxford, to support Park and John The Bluebells child cancer patients First site for The Bluebells Radcliffe hospitals 24th December and their families failed on planning; work on a different Our second planning On the day of Work began on site in North Waltham application was Sebastian’s death, his planning and design commenced narrowly defeated; Refurbished fundraising campaign for The Bluebells on work commenced 6 paediatric isolation is headline news in the the first site generously Our transport service on developing a new rooms at Wexham Ascot and Bracknell offered in North began with providing scheme for a third Park to create News, resulting in Waltham by transport from home alternative site in better facilities and an outpouring of local landowner to hospital for a child North Waltham surroundings for community support Patrick Sweeney receiving a bone marrow transplant With help from our children enduring July long stays in hospital Our bereavement care in Bristol corporate sponsor Work began on began with funding the Langland, we unveil Planning permission building The Bluebells first annual ‘Reflections’ a new brand identity was finally granted remembrance day for for a site in North bereaved families at Our sibling support Waltham, albeit with Dorchester Abbey began with our first sibling activity day 17 pre-commencement conditions to discharge before works could commence
Refurbished a day chemotherapy room at Wexham Park hospital
Page 4 January Work commenced on refurbishing a tired Victorian villa into a facility fit for purpose. The Woodland is due for 2018 completion in June 2018
2011 2012 2013 2014 2015 2016 2017
July Introduced art Hosted our first Increased our Welcomed our first Extended The February Opened The and music therapy parliamentary commitment to Royal visitor, HRH Bluebells to increase Began negotiations Bluebells, delivering at The Bluebells reception to highlight support for families at The Countess of support services and with the NHS to 46 respite breaks in the need for our home by introducing Wessex GCVO to amenities for families secure a new facility Introduced our first the first five months model of care a dedicated The Bluebells in Crowthorne, whole family Christmas outreach team The Woodlands in July event with the Introduced our first 2012 Olympics themed finance and welfare Received recognition ‘Bluebellympics’ support worker at the highest level for the work of our volunteers with the charity MBE
Increased our commitment to social and emotional care Our CEO received with the introduction an OBE from HRH The of a befriender Increased Duke of Cambridge for programme to commitment to services to seriously-ill support beneficiaries mental wellbeing of children and families our beneficiaries with the introduction of a Opened a second counselling service Hub in Bagshot Received national November awareness with a Expanded our Increased our Special Recognition support for children commitment to Secured the award from the Pride with the introduction bereavement care acquisition of of Britain, presented of a dedicated youth with the introduction The Woodlands by the Prime Minister, support worker of a dedicated David Cameron support worker Piloted a 12 month dads’ worker project
Increased our commitment to outreach with the opening of our first Hub in Slough
15th Anniversary issue Page 5 A week before her death, the Trust’s The Westfallen family nomination saw Hollie crowned Bracknell’s Child of Courage - a small way Living without a confirmed diagnosis for a in which recognition could be paid to her child can lead to years of uncertainty and Family incredible bravery, resilience and grace acute anxiety. in fighting an impossible battle. As a baby, Jason Westfallen had been Tragically, Hollie died on the 29th April diagnosed with benign hypotonia, which 2014 – at home, peacefully, in the arms resulted in reduced muscle tone and of her parents. Just one year separated strength. He couldn’t walk and was very focus slow to thrive, with reoccurring chest a life full of promise, hopes and dreams and the worst fear of every parent. Being infections. In 2006, he was subsequently From inception we have helped hundreds The Etherington family asked to write and deliver the eulogy at diagnosed with an immune deficiency of families, tailoring our support according Hollie’s funeral was both an honour and For many of our families, being able to and eventually, after a bone marrow test to individual and whole family needs. a responsibility that was not undertaken access practical support can be a lifeline. in September 2007, the family were told Here we look at just a few of the families we lightly. Jason had Myeloid Displaysia Monosomy have supported over the years, illustrating Coping with a newborn baby while 7, a condition which can lead to acute the myriad of ways in which our support Support for the Oxenham family continues already caring for a seriously-ill child can myeloid leukaemia. has manifested. for immediate and even extended feel overwhelming. Mum of two, Felicity, family members. We recognise that felt close to breaking point when she first Having initially met Jason and his older sister Shannon through its sibling activity days, The Oxenham family learning to live with loss and a lifetime of contacted the Trust in 2014, whilst struggling missing a loved one is highly individual, with a newborn baby and a toddler with the Trust responded to a request to provide Helping families to build memories is so our efforts are never prescriptive but severe disabilities. Mabel was diagnosed the family with transport to Bristol Children’s something the Trust sees as a priority. Four tailored to the needs and wishes of each with Williams Syndrome at just a few months Hospital for the long period of Jason’s bone year old Hollie and her family became particular family. old – she has limited speech, though she marrow transplant. Although the transplant known to Sebastian’s Action Trust following loves to sing, has limited mobility and is was successful, leading to several years of diagnosis of an incurable brain tumour. ‘The Trust has been, and continues to be, tube fed. relatively good health, Jason once again They first enjoyed time at The Bluebells in incredibly supportive. They have helped deteriorated dramatically in 2012 when The Trust’s Outreach Worker, Carla, has August 2013 as an extended family with us create memories that we never would he became virtually paralysed, leading been able to assist by attending frequent Nanny Carol and Grandad John, as well as have imagined. Always with a smile to suspicions of a deadly condition called hospital appointments: Felicity knows she attending events like our Christmas party and shoulder to cry on, they have gone Metochromatic Leukodystrophy. With has an extra pair of hands and someone and Easter Egg Hunt. Wellbeing therapy above and beyond anything we thought Jason’s mobility suddenly affected, the to talk to during these visits. Both girls love came to mum, Louise, as well as Hollie possible.’ Louise. need to provide disabled access in the using the hydrotherapy pool at The Bluebells and sister Emily, allowing a relationship home became a priority to which the and Carla is able help them experience to develop that made us privy to the Trust successfully sought funding to make this together. As well as enabling the sisters Oxenham family during their most difficult the necessary adaptations to the family to enjoy quality time together, it is critical days. When it became apparent that Hollie home. This has helped Jason to become for Mabel’s mobility to improve her muscle really wanted to be a bridesmaid for her more independent, to have the support strength. Carla helps Mabel with her mummy and daddy the Trust was able to he needs and access to facilities that can recommended hydro exercises as well as help with the hastily organised Oxenham address his complex health needs. keeping them both safe in the water. family wedding - such a happy occasion The Westfallens now potentially have a in spite of the worries of Hollie’s rapidly The whole family have come to trust Carla diagnosis for Jason after years and years deteriorating condition. No-one present on and feel confident asking for practical of waiting, although they anticipate further that glorious March day will ever forget the help whenever needed. Felicity sums up genetic tests to establish how this affects beautiful sight of Louise, Emily and Hollie by saying ‘The support offered by the Trust Jason and the rest of the family. Jason’s arriving to meet John, the beaming smile goes beyond anything we can imagine. mum, Donna, explains: ‘The Trust has been on Hollie’s face as she scattered petals as We are so grateful to have the charity in our lifeline and “go-to” in difficult times for she entered the ceremony, or the poignant our lives. I don’t know where we would be over a decade and will continue to be a picture of her cuddled up with her daddy without them. They don’t just help Mabel, huge part of our lives.’ throughout much of the wedding breakfast. they support all of us’.
Page 6 The Hart family The Wardle family The Smallman family Premature twins Noah and Freddie The Wardle family were first referred to Holly Smallman was born with a rare were both born with serious respiratory the Trust in 2013, not long after 8 year old metabolic condition that instantly conditions and a rare brain condition Reece was diagnosed with Severe Aplastic changed everything for her family. Mum, called Periventricular Nodule Heterotopia. Anaemia. In 2016, Reece underwent a Hayley, explained she was left feeling The twins’ dad, Tony, explains: bone marrow transplant, spending weeks alone, drained and anxious. “It was as if in hospital, missing out on some of the things my life had been put on a spin cycle then ‘We were first introduced to Sebastian’s that healthy children take for granted. handed back to me. I had to learn on my Action Trust through our community nurse feet very quickly how to care for Holly in a when the boys were two years old, with The Trust has been able to assist the Wardles very highly skilled medical way, as now her outreach support and a respite break at with practical support and advice on life depended on us 24 hours a day and we The Bluebells. Noah and Freddie quickly financial matters. However, giving Reece had to keep her safe.” made themselves at home and enjoyed the opportunity to simply have fun and swimming in the heated pool as they could enjoy a childhood, despite his condition, Going away as a family for breaks is stay in the water a lot longer than colder has been the most rewarding part of the almost impossible because of Holly’s care public pools. We had a fantastic stay as a Trust’s involvement with the family. requirements, but the family recognise that family away from the hospital, and loved The Thompson family there is a huge need for time away from a Reece has been able to enjoy a number the sensory room, cinema and beautiful stressful household. The lack of local facilities of events and activity days organised by gardens. The support given to us as a family Family life changed forever when two- meant the family had a round trip of 250 the Trust. He enjoyed visiting the Hub and didn’t stop there and we have since been year old Ruby Thompson relapsed in 2012 miles from Liverpool to access the facilities has attended sleepovers, music and invited back to numerous events including with an aggressive form of cancer called offered at the Trust’s flagship facility. cookery workshops, and a trip to separate Dads’ sleepovers, activity days, Neuroblastoma. With her newborn baby Farnborough Air Show. When the Smallmans arrived at The ladies nights, Easter egg hunts, Christmas brother Jack along for the ride, Ruby started the long relapse treatment protocol Bluebells for their first visit in 2013, they were parties and lots more. ‘I have made friends to play pool with at which involved treatment at five hospitals. overwhelmed by the accessibility for Holly the Hub, meeting Ella Henderson from the X The team at the Trust go above and Sebastian’s Action Trust stepped in, providing and the range of facilities for all to share. Factor and making cakes. The Trust also got beyond the call of duty time and again transport so Mum, Claudia, could focus on Holly’s needs were fully catered for with me a West Ham shirt! I loved attending the and at times we are overwhelmed by the Ruby and Jack’s wellbeing. The Trust helped specialist equipment that not only attend to Boys Sleepover – I had time away from my support we continue to receive. Our life is the family make the most of precious time her personal needs but made family activities family and made friends who understand better for having Sebastian’s Action Trust outside hospital with support at home and fully inclusive. Two planned returned visits in my illness as my friends at school don’t.’ as part of it and some friends for life have breaks to The Bluebells where they could 2016 and 2017 had to be cancelled because been made long the way too. Whatever play, swim, attend special activity days and of prolonged stays in hospital, but the family direction Noah and Freddie’s health takes make some wonderful memories. finally managed to visit The Bluebells again us in, it’s comforting to know that SAT will be over Christmas 2017, enabling them to right beside us.’ In the three years since Ruby died, the spend precious time together with extended Trust has continued to support the family family. The Bluebells is a haven for families Despite now living some 300 miles from by offering sibling support to Jack, as well like the Smallmans; it provides the sense of The Bluebells, Noah and Freddie’s parents, as emotional support for Claudia to help leaving worries and stresses at the door for Gemma and Tony, formed their own cope with the difficulties of every day as the duration of a stay and provides space, charity, Sporting Footprints, to support well as the significant ones such as Ruby’s privacy and opportunity to spend time the Trust by raising funds for sport and birthday, the anniversary of her death, together making precious memories which leisure equipment, as well as funding and Christmas. ‘The pain of wanting them can be treasured forever. specific projects designed to support our back is always there, but these days are beneficiaries such as sponsoring events like especially tough as they highlight the one our annual remembrance day and sibling who is missing.’ activity days. They are shining examples of the giving nature of our ever evolving Jack is looking forward to attending a ‘family of families’. sibling day. ‘He misses his big sister and has already made friends with some of the other butterfly siblings.’
15th Anniversary issue What the future looks like
Page 8 Sebastian’s Action Trust is a charity that life-limited children and adolescents at living quarters of the Superintendent of continuing to deliver respite breaks at prides itself on being ever evolving, any one time, this single facility cannot Broadmoor Hospital. ‘Woodlands’, as it The Bluebells to 150 families each year. responding to unmet need and enabling possibly meet demand and it is with this in is now known, officially became ours last Additionally providing outreach and its future direction to be determined with its mind that we are now excitedly replicating November, enabling the Trust to begin a specialist services to 500 families each beneficiaries at its core. With the realisation our model. five year programme of renovation and year and a calendar of around 75 events, of our founder’s last wish, The Bluebells has expansion in order to turn a tired Victorian activities and workshops to around 2,000 We entered negotiations in February 2017 become a model of excellence offering villa and its surrounding buildings into beneficiaries. All in order to reduce with the NHS to acquire a two and a half services, support and a community that facilities fit for the many purposes our isolation, increase levels of support and acre wooded site that in Victorian times quite simply is not available elsewhere in beneficiaries require. The anticipated five build resilience in those who live with comprised Kentigern House, the private the United Kingdom. Yet with around 49,000 year project will run concurrently while extraordinary challenges on a daily basis.
Over the next five years, where Phase Description Timescale funding has been secured, we aim to complete the following: Ash House – renovation of the former Kentigern House to provide • Jan - May 2018 1 essential accessibility for our beneficiaries (hoists, wet room, personal • Contractor appointed care facilities) as well as wellbeing and therapeutic facilities • 20 week programme of works including counselling, multifunctional sensory play, a games and • £387,000 renovation budget, with additional costs movies room, and a communal kitchen and dining room. for equipment and furnishings Beech Lodge – remedial refurbishment of an ancillary (and temporary) building to provide music therapy, arts and crafts, a teen den, and horticultural therapy.
Cedar Lodge – essential renovations of the former nursery to create • June - Sep 2018 2 day care amenities to include accessible toilets and facilities for • £100,000 renovation budget, now pledged wheelchair users throughout the building, a soft play area, an advice and guidance library, finance and welfare suite, family therapy and one-to-one counselling rooms, a community cafe, and offices for our outreach and specialist support staff. Will also include essential remedial works to the play areas that surround Cedar Lodge.
Woodlands Gardens – the grounds at Woodlands include a vast • October - December 2018 3 area of dense woodland in addition to several tired formal play • Currently at design, planning and fundraising stage facilities that will be completely overhauled to ensure maximum • £20,000 of estimated £80,000 required, now pledged accessibility for our beneficiaries, as well as providing a stimulating and welcoming natural environment for all visitors.
Ash House – removal of the temporary building Beech Lodge and • July 2019 - March 2020 4 the unused outer courtyard of Ash House to accommodate a two • Currently at design, planning and fundraising phase storey extension that will add a hydrotherapy pool and wet room • £750,000 (provisional sum) required to complete, changing suite, replacement art room, replacement music therapy of which £136,000 now secured suite, replacement horticulture therapy room, new mini gym, new multifunctional reception room, new wellbeing therapies room, new bereavement suite and new training and workshop room.
Woodlands Lodges – installation of three cedar clad, self-catering • October 2020 - June 2021 5 and fully accessible lodges enabling beneficiaries to enjoy • Currently at design, planning and fundraising phase Woodlands for respite breaks, including ‘butterfly breaks’ for • £350,000-500,000 (provisional sum) required to families after the death of a child. complete building phase, with additional costs for equipment and furnishings
15th Anniversary issue Page 9 News Round-Up
The development of our new facility, The Woodlands, has been, and continues to be, a major focus for Hydrotherapy pool stimulates us here at Sebastian’s Action Trust. the senses That hasn’t stopped us working hard fundraising and making improvements We are proud to offer hydrotherapy to our existing facilities, ensuring all at The Bluebells. Many of the children we have on offer continues to meet we support are unable to use public the needs of our beneficiaries. pools due to their health so we can give families the opportunity to enjoy quality This news round-up highlights some time together in the water, in a safe of the main developments over the environment created especially for past few months. Our new cinema room featuring their needs. Children love playing on the LEGO fire truck state-of-the-art technology Children LEGO crazy for a new Jane Gates, our Chief Executive, Cinema room adds life to days commented; ‘The launch was a lovely fire engine At the end of 2017, we celebrated the opportunity to meet many of those who Our valued corporate partners LEGO launch of a new state-of-the-art cinema played a part in creating this fabulous very kindly donated a fire truck made room at The Bluebells. This was made new cinema room which will give joy entirely of LEGO which sits in the possible by a collaboration between and precious memories to so many of grounds of The Bluebells. Capturing Together For Cinema – a charity our beneficiaries, adding life to days in the imagination of our young visitors, spite of an uncertain future.’ specialising in bringing the magic of Bold images are this a great addition to our range the big screen to respite facilities and We are delighted that so many of our projected onto of outdoor play equipment. We are hospices – and Knektd, who managed families visiting The Bluebells have been the pool wall also grateful to Sporting Footprints the design and construction. able to enjoy quality time together Children love the who funded a cover to keep the fire in this fabulous new facility, which pool when the engine protected in all weathers. The launch was glitter ball is on attended by Ian was officially christened at the girls sleepover in January! Morrish, founder Adding to this, we were delighted to of Together For install a projector in the pool room Cinema, Shaun which beams light and images on to Wilson, Director the walls and ceiling. The attention of Knektd, and grabbing images can help promote many of the colour and shape recognition and suppliers who enhances families’ experience in the so generously pool. The installation of a glitter ball donated adds to the effect and was put to good equipment use late at night recently by many of and services the girls attending a sleepover. Ian Morrish, Founder of to help make Girls enjoy time in the cinema room Fire truck cover kindly donated Together For Cinema this possible. on their sleepover by Sporting Footprints
Page 10 Lights, camera, action Last November we launched a new short film about the Trust. Featuring interviews with some of our beneficiaries and staff, it highlights the ways in which we support families of seriously-ill children and the difference we make. We are very grateful to Ben and his team Great Fosters - a stunning venue at Millstream productions who managed for our Crystal Ball to capture the essence of our charity so well, and to everyone who took part. The event raised in excess of £50,000, a staggering amount which will enable To view the film visitsebastiansactiontrust. us to provide much needed support org/about-us/our-films to our beneficiaries who live every day with the challenges and uncertainty which comes with caring for a seriously- ill child.
A royal visitor Staff and families ‘Make Some Noise’ at The Bluebells with Matt Jarvis of Heart FM Berkshire Back in October, we were honoured to welcome HRH Princess Michael of Kent, and cupcakes before dancing to the who joined us as guest speaker for our Global’s Make Some Noise music. Matt Jarvis, the breakfast DJ fundraising lunch at Coworth Park. campaign funds Bluebells role from Heart Berkshire, dropped in on The Princess is an accomplished writer, The Global group, home to radio the rave, helping to spread the word and she gave us all a fascinating insight stations like Capital FM, Heart FM, LBC about the Trust and the work we do into her trilogy of novels. Councillor and Classic FM, selected Sebastian’s to support families. Samantha Rayner kindly hosted Action Trust as one of the charities the lunch on our behalf, which raised to be awarded a grant to fund our In the weeks leading up to it, we vital funds to help us support families Family Liaison Co-ordinator role at welcomed some of the DJ’s from of children with life-limiting and The Bluebells. Global’s radio stations to The Bluebells life-threatening conditions. to interview some of our families, as This was an amazing opportunity for well as staff. The interviews were then our charity, giving us valuable media broadcast throughout ‘Make Some exposure on some of the UK’s most Noise Day’. popular radio stations. All radio stations owned by Global came together The team from Global also made Crystal Ball is a sparkling success on October 5th for their big ‘Make a short, but moving, film about the Some Noise Day’ to fundraise for their Trust. Screened at Global’s Gala Last November we held a fundraising charities. We welcomed some of our Dinner last December, it highlighted Crystal Ball to celebrate our 15th year families to a ‘sensory rave’ at The the difference we make to families as a charity. A champagne reception Bluebells. Children (and adults) had of children with life-limiting and was followed by a delicious meal and their faces painted, decorated t-shirts life-threatening conditions. entertainment included an auction, live music, contact juggling and a casino. HRH Princess Michael of Kent with Jane Gates
15th Anniversary issue Pag e 11 How you can help
invitations and place cards, along Brick Buy Brick Appeal 2018 As a charity without a single penny with some hints and tips to help of government funding, we are your Seb’s Supper go with a swing. – Be forever part of something special entirely dependent upon our own We can also send you a coinathon fundraising endeavours together box for collecting contributions. with the generosity of our supporters Money raised can either be and sponsors. Here are some ways dropped into the office or paid you can get involved and help by bank transfer or cheque. support the work of the Trust. We look forward to hearing about your Seb’s Suppers and seeing the photos of your signature dishes.
SEB’S To get involved please email SUPPERS [email protected]
Seb’s Suppers is a new fundraising promotion for our 15th year. If you and your friends and family love to eat (and at least one of you loves One of the effective fundraising Buy a glass brick to: to cook), this is a perfect way to raise initiatives we used to create The • Memorialise a loved one funds for the Trust. Bluebells was a scheme enabling • Leave a lasting message individuals, corporate organisations How it works: and community groups to purchase Glass Bricks Organising a Seb’s Supper couldn’t a glass brick that could be engraved Engraved Text Brick – £150 be easier! Invite your friends over for a with a short message or logo. fundraising supper (breakfast, brunch A maximum of 60 characters with In 2019, The Woodlands will be or lunch is fine if you prefer) and charge the message of your choice. extended with a plethora of new them £15 each. Either cook the meal facilities to include a hydrotherapy Engraved Logo Brick – £200 yourself or ask everyone to bring a dish. pool, new counselling and advice A monochrome engraving of Have fun, take photos if you can for us to centre, new music and arts room, a your organisation’s or community share on our social media – and worry new wellbeing suite and a communal group’s logo. about the washing up the next day. area. We are offering the opportunity to have your own personal glass brick Visit www.sebastiansactiontrust.org/ Please contact Lorraine Mace at in the new extension which will forever campaigns where you will find more [email protected] be part of The Woodlands’ story. details, downloadable place mats, or ring 01344 622500 to discuss further
Page 12
To kick start 2018 we are launching a with love. We have even designed a new campaign, inviting you to help thank you card so that this scheme can us create a warm, welcoming and be gifted to loved ones as a thoughtful accessible facility at The Woodlands. present that continues to give to our Specifically chosen to ensure we can families. Here is a sample of what you accommodate most budgets, we can sponsor, either as an individual have selected a range of items that will or collectively with family, friends literally help to furnish our new home and colleagues:
£15 £25 £50 £100 £250 £500 £1,000 £2,500
In the kitchen Set of 4 mugs A baking set for A six piece A coffee machine A microwave, Pots, pans, a food Dining room table A cooker, fridge for our cookery sessions crockery set for for our communal toaster and kettle processor, blender and chairs for our and freezer for community cafe with children our communal kitchen for our communal and juicer for our communal area our communal kitchen kitchen communal kitchen kitchen
All things play A mirror ball A safety helmet A didi car A wheelchair A pedal go-kart A dreamliner swing A reach and The Manhattan tunnel match sensory 11 mobile sensory play resource unit
In the garden Seeds, pots and A parachute A set of garden A set of trumpet A tough spot Two raised planters Activity panels for Water wall with gloves for our games steps water and sand for horticultural outdoor play reservoir and spout horticultural garden play table therapy
Keeping it cosy A worry bear for a A month’s supply Two warm throws A sensory cuddle A set of padded A set of weighted A comfy disabled An electric bereaved sibling of wellbeing for our sensory beanbag mats for floor play blankets to comfort recliner chair massage chair therapy products play zone mobility impaired for one of our for wellbeing children communal rooms therapies
Being practical Cleaning products A month’s supply A month’s supply A year’s A month’s Books and dvd’s A height A wall mounted for one week of antibacterial of tea, coffee subscription to a supply of fuel for to support our adjustable hoist and tracking and sanitising and refreshments range of wellbeing vehicles providing bereavement disabled system products at our outreach resources for transport to library changing trolley centre parents to share families needing to access far flung, out of county hospitals
To help us furnish The Woodlands with love, please contact [email protected] or call 01344 622500
15th Anniversary issue Page 13 What Sebastian’s Action Trust
Having someone at the We stayed at The Bluebells at a time when Sebastian’s Action Trust end of the phone when I we were exhausted with the constant provides a home away just need to let off some means to me: stress of appointments and the support our from home. A place to mix steam really helps. with like-minded people, to severely disabled daughter needed. Those Cathy, mum to Reece, relax and never be judged. We support families of seriously-ill few days were amazing. We were able to aged 13 children from diagnosis, through talk for the first time about the trauma of our Angela, mum to Amy, treatment and beyond. Offering daughter’s birth. We were able to breathe aged 11 for a few moments to reassess, gather our bespoke support, based on the needs The Bluebells team care about our thoughts and strength and our daughter of each individual family, we aim to whole family, and that makes it was able to have quality time with us. unique, even amongst other charities meet their unmet needs, ensuring Tara, mum to Hannah, aged 9 supporting children and young I don’t feel so alone – they never have to face life alone. people with additional needs. We I always feel I have are so grateful to Sebastian’s Action someone to talk to or help I can’t thank Sebastian’s Action It is always heartening to hear positive Trust. The Bluebells team get what me. I am forever thankful Trust enough. Especially for the our life is like day to day. They really of that in dark times. mums and siblings’ sleepovers. feedback from our families who take Such an amazing time. It’s a real work to make a difference, and that Abby, mum to Freddie, the time to express their appreciation treat to have some me time and means the world. Outreach support was invaluable aged 3 recharge my batteries. for what we do. Here are a just a few Wendy, mum to Leo, aged 17 when my husband was working comments received from some of our away from home. We love Amanda, mum of twins families, highlighting how Sebastian’s having the hydrotherapy pool Holly and Katie, aged 9, and Ewan, aged 12 Action Trust makes a difference to them. to ourselves and there is always someone available to help look It is really wonderful to be after my younger son should I able to access hydrotherapy need them to. and music therapy through Arriving for a day at The Bluebells was Sebastian’s Action Trust. Caroline, mum to like a breath of fresh air. Normal days out The Bluebells is like a home Both these activities give our Enzo and Luca for us are difficult, stressful and often just away from home with daughter so much pleasure. too much work, leaving me exhausted. extras! It exudes love and At The Bluebells, nothing was too much everything seems effortless Rebecca, mother to trouble. They helped us all to relax and compared to everyday life. Neve, aged 10 The Bluebells has enabled Daisy have fun. We know when everything Sebastian’s Action Trust has given Steph, mum to Will, aged 12 to do one of her favourite things else gets too much, at least we can – to swim – and it has enabled come to the lovely Bluebells. Thank you us support and something to hold me to talk to people who for being there and understanding. on to in very sad and difficult times, for which we will always be understand my situation. Both Jo, mum of three these things have enhanced grateful. Our family and friends our lives enormously. will remain avid supporters of this truly lovely and important charity, Kate, mum to Daisy, for now and for always. aged 4 Shelley, bereaved mum I came for a coffee morning and the team noticed straight Sebastian Action Trust look at the family as away how tired and run down I a whole and tailor the services that would was. I was offered a break and I benefit them. Our son Jamie particularly have never felt so grateful. That enjoys his visits from Tracy [the Trust’s Youth When we went to Bluebells weekend I swam with my boys for Sebastian’s Action Trust Support Worker] and loves visiting The The Trust’s help, guidance the first and only time and totally supports siblings with treats, Bluebells. Philippa [the Trust’s Bereavement and advice has given us to sleep, it was amazing. the confidence to make Me and Jake got to share forgot my worries. Memories like parties and activities, which Co-ordinator] discovered my love for the violin that are totally priceless. they look forward to with and organised a couple of sessions playing decisions regarding our a bedroom and it was delight. They help siblings feel the violin with a friend of hers. It’s that level of son’s educational outlook. very special because we’ve Donna mum to Matthew, aged 12 special and appreciated. personal service which takes our needs into Wasim, dad to Suleiman, consideration and is second to none. never done that before. Ali, mum to aged 10 Jesse, age 4 Theo and Arthur Suki, mum to Jamie, aged 8
Page 14 Thank you to our sponsors We would like to thank the following organisations who have kindly sponsored this special edition of our newsletter.
Encompass FM congratulates Sebastian’s Action Davis Burton Selleck congratulates Sebastian’s Martin & Co Camberley congratulates Trust on its 15th year and is proud to sponsor this Action Trust on its 15th year and is proud to Sebastian’s Action Trust on its 15th year and is special anniversary edition of their newsletter sponsor this special anniversary edition of proud to sponsor this special anniversary edition their newsletter of their newsletter
encompassfm.co.uk davisburtonsellek.com martinco.com
If you would like to sponsor a future edition of the newsletter we would love to hear from you. Please call 01344 622500 or email [email protected]. The newsletter is published twice-yearly and the next edition will be distributed during October 2018.
15th Anniversary issue Page 15 Bluebells Fete Music on the Farm – Santa Fun Run – Virginia Water June Aug Dec Fun for all the family in Dummer Farm, Basingstoke – £15 per adult, £10 per child, 10 the grounds of our flagship 18 A mini music festival with 2 £40 per family respite facility. popular tribute acts. Walk, run, prance and dance 2018 More details to follow. around the lake in this annual festive favourite - all entrants Events and Challenges Mill Ride Golf Day – £75 will be given a Santa suit Sept / Corporate package £420 and a medal. 24 Put together a team for this Over the coming months we have an popular fundraising golf day – exciting range of fundraising events 15th Year Party – St Anne’s includes brunch, 18 holes Dec and challenges planned. There really Manor Hotel, Wokingham of golf and dinner. is something for everyone – getting 15 Help us celebrate this very involved is a fantastic way to help Bagshot’s Big Bike Ride special milestone for the June Curry with The King raise vital funds to help us support 15/50/75 mile options Oct Trust at a dinner dance. families of seriously-ill children. 24 £15-£25 entry fee – The Mogul, Bagshot – £30 2 Tuck into a delicious Indian meal while listening to classic Wine Tasting at Cordes Hall, To book onto any of these events, Jul Elvis courtesy of popular London Marathon Sunninghill – £15 please call our team on April 6 entertainer, Miguel. Cheer on our runners Enjoy a relaxed evening tasting 01344 622500 or email 22 in this year’s iconic race. some summer wines, and take [email protected] Coworth Park Lunch – £50 advantage of a discount on Oct Visit www.sebastiansactiontrust.org/ Barn Dance at Charters, any wines bought during Champagne reception April 17 events for more details. Sunningdale – £15 the evening. followed by three-course 27 Take your partner by the hand, lunch. and do-si-do the night away. Quiz Night at The Woodlands Jul Halloween Walk – £10 per Follow us on: – £15 Nov person / £25 for a family sebastiansactiontrust Skydive at Old Sarum Airfied, 14 Have a tour of our new facility May 4 A 15km daytime Halloween @SebsActionTrust Salisbury – £50 deposit and before testing your mettle in 6 themed walk starting from sebastiansactiontrust £400 sponsorship our fundraising quiz. Fish and The Woodlands – one for Fulfil a personal challenge chip supper included. Book the whole family to enjoy. with an exhilarating skydive. early for your first glimpse Contact us:
of our new facility. Sebastian’s Action Trust, Evensong and Dinner – Nov Unit 8 Tanners Yard, Guildhall, Windsor Ride 100 Jul 15 – £60 per person London Road, We have places available A wonderful evening of song Bagshot, GU19 5HD 29 in this popular bike race. and a delicious dinner in the From June 2018: Email fundraising@ beautiful surroundings sebastiansactiontrust.org The Woodlands, of the Guildhall. to enquire. Upper Broadmoor Road, Crowthorne, Berkshire, RG45 7FN Bluebells Quiz – £15 Camberley Heath Golf Day – Nov May Form a team and put T: 01344 622500 £75 / Corporate Package £420 23 17 Includes bacon rolls and your heads together E: [email protected] two-course dinner. for our quiz night. Entry www.sebastiansactiontrust.org includes a fish and Sebastian’s Action Trust is a registered charity and a company limited Abseiling Challenge – £30 chip supper. by guarantee: Registered Charity No: 1151146 June Registered Company Number: 8339436 deposit, £150 sponsorship 2 Scale the heights with our first fundraising abseil.