Yesterday the people of the United Kingdom made a momentous decision- exercising their democratic right via a referendum to decide whether we, as a nation, remain in or leave the EU. After months of argument, debate, counter argument and what would seem a fair degree of contradiction it came down to each and every eligible one of us making a choice; the sum of our views resulting in a single, collective action that will have consequences for us all for decades, and generations, to come.
Here at Sebastian’s Action Trust, we are privileged to walk alongside extraordinary people who live without choice. Through illness and disability their lives are, to some degree, determined by gruelling treatment regimens, a dependence upon medical intervention, the inevitable fragmentation of family life that comes with frequent spells in hospital and an often overwhelming sense of uncertainty about the future.
Just weeks before he died, our founder Sebastian painstakingly wrote out a quote from a much loved book (Lord of the Rings- the trilogy)- which read:
“.....All we must decide is what to do with the time given to us”.
Our charity is built upon this principle; our mission is to walk alongside families of children with complex health needs from diagnosis, through treatment and beyond. Our support ebbs and flows in keeping with what each and every family requires; they know we remain ’here’ for them- always.
Over the past twelve years our work has evolved from realising Sebastian’s wish and creating our flagship facility, The Bluebells, to providing emotional, social and practical support in a myriad of ways through an outreach service that spans five counties of the South of England. From the respite breaks we offer at The Bluebells we reach families from no less than 46 counties of England, Scotland and Wales- an incredible feat for one small charity started by one small boy.
We pride ourselves on continuing to evolve; always in response to identifying unmet need. We know that so many of our families consider our services a lifeline- from providing opportunities for families to build memories together, being a constant and offering solutions to seemingly impossible problems to becoming part of a community where peer support ensures no-one ever feels completely alone.
We know we cannot change a child’s prognosis but we can make a difference to the way in which a family in such circumstances is supported. The Bluebells is a safe, private place where joy can be shared, memories created and family unity can be briefly restored. Ultimately our capacity is limited and we cannot possibly meet demand, especially where we want to also give ongoing support to families living with the heartbreak and devastation that comes with the loss of a child.
For these families, and we already support more than 85 who live with grief in their hearts, we plan to create a separate space within the grounds of our Hampshire idyll where they can retreat to grieve privately, seek the bereavement care we offer and take time together, or separately, to find a brief moment where they can talk freely of their fears, feelings and frustrations.
Although we are focussed on a year of consolidation we are committed to providing these additional provisions for our ‘butterfly’ families, knowing that we will be able to satisfy their desire to retain a connection with the Trust and our house, but that we will be able to give them the privacy, space and amenities they will need to allow them to grieve as they choose. As far as we can tell, there isn’t anywhere in the UK that provides families with a private ‘butterfly break ‘and we hope to remedy this in the very near future.
In our next newsletter we will unveil our ‘Buy for Butterfly’campaign, to which we hope you will donate. Until then, above is a photograph (taken by the wonderful Stuart Wood) from the grounds of our Remembrance Garden at The Bluebells, a special place where our Butterfly Families come together for our annual service of thanksgiving and where many choose to come throughout the year for quiet contemplation and a chance to remember happier times when their family was complete.
We are so proud of our collective actions that together enable hundreds of families facing incredible challenges to feel supported, included and considered. Thank you, our earnest followers, for sharing in our journey and for helping us to build our ever evolving’ family of families’. Together, we have chosen to make a difference.