Eleven years ago today my beloved son took his last breath, having battled with cancer for a quarter of his life. Throughout that roller coaster of surgery, chemotherapy, remission, repeated relapse and endless uncertainty Sebastian displayed remarkable maturity, a positive attitude towards his fate and a complete disregard for self pity. Instead, he chose to focus on what he could do, not for himself but for others who, in his opinion, faced even greater challenges ahead.
From his hospital bed, en route to an operating theatre for what we now know was his last surgical procedure, Sebastian outlined his idea for somewhere to which families could escape, to relax away from the punishing treatments and isolation of hospital and build memories together as a family unit, in spite of the uncertainty of the future that lay ahead.
Not many nine year olds would conceive of such a plan, but in the eyes of a little boy whose only regret throughout his long illness was the amount of time away from his family he was denied it was a logical, practical solution to a problem that affected so many like him. The fact that no facility of the kind he envisaged actually existed was a small obstacle to overcome, with a little help from family, friends and the wider community.
Which is where, dear supporters, you all helped to take a little boy's last wish from the visionary to reality.
You ran marathons, climbed mountains, cycled countries and continents, washed cars, donned ridiculous outfits, baked cakes, attended events, organised events, secured corporate sponsorship, gave donations in lieu of gifts, spread the word, raised our profile and so much more to show your support for the charity that proudly bears our founder's name. You gave your time, energy, love, friendship and commitment to a cause that is passionate about helping others in a myriad of ways; a charity strives to walk alongside families of seriously- ill children from diagnosis, throughout treatment and beyond.
When we finally opened The Bluebells, a mere seven and a half years after Sebastian's death, you celebrated with us in the success of creating the UK's only purpose built facility of this kind, which is exclusively available to families of life- limited and life- threatened young people. In no time at all what we originally envisaged as a regionally focussed service expanded to meet a national reach, with families travelling from 34 counties of England, Scotland and Wales to spend time at the place so many of our families now fondly regard as their private sanctuary.
Although as a charity we had been committed to providing ongoing practical support to families from the Trust's inception, it became evident from the opening of The Bluebells that gaps in service provision continued to grow, leaving so many feeling isolated, unsupported and unable to meet the challenges of caring for the often diverse needs of the whole family. Our commitment to developing an enhanced outreach provision to support families in Berkshire, Bucks, Surrey, Hampshire and Oxfordshire has already gone some way towards achieving a more joined up service and we love the fact that we are an ever evolving Family of Families. Our team is a blend of trained professionals, actual service users and volunteers- there is a place for everyone at Sebastian's Action Trust.
Today, we remember the origins of our charity and it's founder, Sebastian. A life that was short but fully lived in the all too brief time we shared together. I know he would be incredibly proud of all that is achieved in his name and forever thankful to you all for the continued commitment you show to our cause.
Wishing you all peace at this time of year and thinking especially of the families we support, now and always.