Here for families of seriously-ill children. Always.

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support for bereaved families


Welcome to our Sebastian’s Action Trust blog


This is a very special year for our charity and through this medium we want to share with you news of the exciting developments to come.

We have launched the blog today to kickstart our celebrations of ten years of Sebastian’s Action Trust- a milestone that we are proud to launch on the 18 February, our founder Sebastian’s 20th birthday. I’m delighted to have the honour of being our first blogger, writing to you as Sebastian’s mummy and CEO and although we have much to look forward to it seems only fitting on this day to take us back to where the Trust began……

Ten years ago today, on what would have been his tenth birthday, my family, close friends and Sebastian’s peers all came together at his school, Hall Grove, for a celebration of our boy’s life. It was a bittersweet occasion- being in a place he loved and felt safe, surrounded by the boys with whom he had frequently laughed, occasionally studied and regularly played, and yet remembering a life that was cruelly all too short. By this time, for it was eight weeks after Sebastian had left us, we had already agreed to honour our son’s last wish by creating the special place he wanted to build for other families to enjoy. Although Sebastian launched his fundraising campaign on the 12 December( published in our local papers on Christmas Eve, the day he died) it was at Hall Grove that we first publicly spoke of Sebastian’s wish- the outpouring of support and pledges that followed was absolutely overwhelming, and we are so proud to have that strong association with so many from this time to this day. Reflecting now on a decade of our Trust it is hard to believe we are where we are today.

Without a model to replicate, with no experience of major fundraising, let alone any knowledge of planning, construction or project management, we set out with hearts full of determination and an unwillingness to accept defeat. Without Facebook,Twitter or smart phones, being able to communicate our message and galvanise action was a considerable challenge but with an ever growing band of faithful followers word spread and our mission became the mantra of our masses, in spite of the all too frequent misconception that we wanted to create a hospice.

Today, The Bluebells is a shining example of what happens when a community comes together. Seven and a half years of working in unison, without a single penny of government funding, to achieve a build delivered on time and within budget. To all who ran marathons, climbed mountains, cycled across countries, baked cakes, organised events, gave time, money or services- a heartfelt thank you for your commitment to the cause and belief in Team Seb.

It is not simply a house we have created-it is, to quote one of lovely volunteers, a home that gives a big hug to all who cross it’s threshold. It is a place for love, laughter, joy and living- somewhere memories are made and refuge is offered from the stresses of the outside world. I think it fits perfectly with what Sebastian wanted for others, for he knew he would not live to see the realisation of his wish and entrusted us to follow his lead. I know my son would be so proud to hear countless families call Bluebells ” their holiday home”- we have become the family of families he wanted. We currently support more than 250 families, from 34 counties of England, Scotland and Wales- evidence indeed of the demand for the support and services we offer. We work collaboratively with many hospitals, hospices and other healthcare agencies- our services complement what is available elsewhere and our aim is always to fulfil unmet needs of the families at the heart of our operations.

A decade on, our services continue to evolve from listening and responding to our families’ needs, into something much greater than Sebastian’s original wish. With every forthcoming contribution to this blog you will learn more about what we do and the shape of things to come. Today, however, I hope you will all join me in remembering Sebastian and the journey he set us on and all who have played a part in creating our charity.

Happy 10th Birthday Sebastian’s Action Trust- proud to continue to fulfil our mission- to walk beside families with seriously-ill children, from diagnosis, through treatment and beyond.


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