Into our th year Anniversary15th issue Here for families of seriously-ill children. Always. Issue 27 NEWS Spring 2018 Spring 2018 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.