Throughout the years but especially as your anniversary approaches I often reflect on our time as a family of four and the lessons your life has provided. Whilst many could forgive me for feeling sad or even resentful that your time with us was cut short only a few weeks before your tenth birthday, I will always remain so thankful for the nine and three quarter wonderful years we shared and the honour that was bestowed upon me to be your mummy.
When you launched your last wish just twelve days before you died we had no idea what your plans would entail, nor how your legacy would manifest. On so many occasions over the past thirteen years those that never knew you have commented that your vision was remarkable, that you were mature beyond your years and that your selflessness was humbling. Whilst these sentiments are all true, Daddy, your sister Rebecca and I would all attest that in your characteristic no- nonsense manner you were simply focussing on giving others what mattered most to you- being with us, your family. We remember how much you yearned to be free of hospital, of disease and of the all too frequent separations from home and the people you loved most.
Although we were devastated by your death the decision to take on your campaign on your behalf was instinctive and has rarely been regretted. With the support of family, friends and the local community we never felt alone as we worked towards ensuring your vision became a reality. I hope that in guiding us from afar The Bluebells fills you with immense pride, knowing that your desire to help other life- limited children has impacted on hundreds of families who now consider it "their" house as they enjoy the respite it offers from the harsh realities of an unjust, often unfathomable world where childhood illness and disability are the norm. I hope that you are similarly pleased to see how the Trust that proudly bears your name has continued to evolve, crafting our holistic model of care so that each family member is supported in their own right as well as considering the needs of the collective family unit. With our outreach services, calendar of events and dedicated Hubs we are able to give families support measures at home, in hospital and in the community which is helping them to feel less isolated, more supported and more resilient to fight the daily battles we know are part and parcel of living with critical illness. We strive to welcome all beneficiaries to our ever evolving 'family of families', knowing that peer support from those who walk in similar shoes brings comfort, understanding and empathy. We also ensure that we continue to hold families who experience the tragedy of losing their beloved child, knowing that with death a lifetime of missing begins and help is needed to adjust to the new, unwitting normal that follows.
Today, rather than focus on the life you have been denied I would rather echo your positive attitude to life by thinking of the wonderful lessons you have taught us.
To think not of what illness or disability prohibits but what can still be achieved.
To see the strength and unity that comes from family, friendship and caring for each other.
To accept that we have been blessed with the time we have shared, knowing it will never have been long enough.
Sebastian,on Christmas Eve in 2003 you set us on a remarkable journey that has brought so many wonderful people into our lives- our volunteers, our staff, our supporters and our beneficiaries who all come together under the 'team Seb' umbrella. There is still so much to do and the road that lies ahead will, no doubt, contain plenty of new challenges but together we will uphold your charity's ethos and reputation for the families who need us now and into the future.
With unending love, now and always,
A family of four forever
Nobody likes to think about death but as the saying goes death and taxes are the only certainties in life!
Sebastian's Action Trust supports families from diagnosis, through treatment and beyond. Sadly for some families 'beyond' means the loss of their precious, much loved child. As Godparents to Sebastian and supporters of the Trust from its inception, we want to help ensure that the Trust continues to support families of seriously-ill children.
That is why we have left a legacy to the Trust in our Wills. Making a Will does not have to be a complicated or difficult process, but it is a necessary one if you want to ensure that your loved ones and causes you are passionate about benefit when you have gone.
Wills and legacies are difficult subjects to broach with supporters which is why 'Remember a Charity' week is so important. If it reminds just one person to put
down in a Will that they would like a legacy to go to Sebastian's Action Trust, then it has achieved its purpose.
Lesley taking part in a Crown and Tiara run for the Trust
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.
24th December is the anniversary of our founder's death - an open letter to Sebastian is shared with all who know and love our charity:
In the early hours of Christmas Eve twelve years ago we shared our last, most precious moments together as a family of four. It was, without doubt, our saddest and most difficult time as we knew our lives would go on with you in our hearts but not at our sides and that a lifetime of missing you was to follow.
That bottomless, life changing sense of loss has never left us. It would have been so easy to allow bitterness and regret to consume us along with the physical pain of our separation but through your actions and inspiration you helped us to find a different, more positive path that would sustain us through the darkest of days that followed.
Over the years so many have marvelled about the foresight and maturity of a little boy who could launch an incredible wish, thinking only of others, when his own life was rapidly drawing to a close. We are the lucky ones, who remember with such fondness the wonderful seven years preceding initial diagnosis, as well as the qualities you demonstrated throughout times of adversity - your love of life itself and ability to remain so resolute, never complaining, asking 'why me?' or thinking of what your illness took from you.
Your Daddy, Becca (sister), and I have often speculated on what private thoughts you must have had in the months before you took your final breath; until the very end you remained so determined to beat your cancer and yet on reflection it is evident you were acutely aware of your mortality and the diminishing chances of recovery, even though you chose not to articulate such thoughts aloud, no doubt for fear of upsetting us. When you so painstakingly printed out a quote from your much loved copy of Lord of the Rings, " all we must decide is what to do with the time given to us", which you gave me for safekeeping, you set us on a journey that has taken us from the depths of personal loss to the bittersweet exhilaration of fulfilling your last wish, knowing you were willing us on through every arduous twist and turn of a seemingly never ending road.
That quote is now etched on our hearts; it is the cornerstone upon which your charity was founded and which is now proudly perpetuated by our ever evolving 'Family of Families'. When we set out to achieve what we now know as The Bluebells, the place you envisaged that would give other families the opportunity to build precious memories in spite of an uncertain future, we thought our mission was to create a physical building- but that was the (relatively) easy part. The bricks and mortar may be aesthetically pleasing and provide the space for memories to be captured but what is infinitely more important are the bonds that have been created between our families, our team, our volunteers, our supporters and our sponsors. Together, we are a blended family, walking together through the good days, the bad days and the very darkest of days. The actions of the Trust touch lives in so many ways beyond providing family respite breaks and our services will continue to evolve in response to need and listening to those we are here to support.
Today, and every day, we give thanks for the gift of life that brought you to us for the most exquisite nine years and ten months. We will always be a family of four, but you are also the guiding light of a much bigger family that transcends two worlds; those here that your charity can hold and support and the beloved butterflies that flutter freely, devoid of illness and disability, with you.
Fly fearlessly our precious son, you are with us always, with unending love, Mummy, Daddy and Becca xxxx
12 years ago on the 12th December, our founder Sebastian officially launched his last wish, setting his charity on a journey that has taken us from the heartache of losing our boy just twelve days later (on Christmas Eve 2003) to where we stand today. Sebastian’s aim was simple yet vital; he wanted to create somewhere private, spacious and exclusive for other life-limited children, giving them a place where they could rest, relax and build memories with family and loved ones away from prying eyes, gruelling treatments and the stresses of an uncertain future. Sebastian’s personal experience as a young boy battling with cancer provided him with a mature insight into the impact on family life following diagnosis of a life-threatening condition and it is upon these foundations that our holistic approach to family care has evolved.
It took seven and a half years to finally realise Sebastian’s dream but today The Bluebells is the UK’s only purpose built family respite house, delivering the support Sebastian envisaged to hundreds of families who travel from more than 40 counties of England, Scotland and Wales to access our support. In recent years the expansion of our outreach services has resulted in delivery of emotional, social and practical support to more than 340 families in Berkshire, Surrey, Hampshire, Buckinghamshire and Oxfordshire. Our mission is to walk alongside families of seriously-ill children from diagnosis, throughout treatment and beyond- we remain a constant, listening to our families and adapting to their concerns to address unmet needs.
With more than 49,000 seriously-ill children in the UK we are clearly unable to meet national demand but we recognise the need to expand our service provision to meet an ever growing population within our outreach catchment area.
It seems entirely fitting that in a week that poignantly reflects on our origins we are on the cusp of bringing our model of care back to Berkshire, the county where Sebastian was born and raised. On the 17th December the Bracknell Borough planning committee will consider our application to build a new ‘Bluebells’ together with an outreach centre in the nearby woodland setting of Crowthorne. Our award winning services have been recognised by Sir Andrew Morris, Chief Executive of Frimley Health Trust, who has endorsed our application to bring a greater Trust presence to Berkshire and it is hoped the planning committee will seize this opportunity to give more families of life-limited and life-threatened children the much needed family support they deserve.
Sebastian, you set us on a remarkable journey that has created an ever evolving ‘Family of Families.’ This week could be another momentous step on an already incredible path - we hope you can guide the planning committee to make the right decision on the 17th.
After the celebrations in 2014 to mark the achievements of the Trust’s first decade of charitable service a year of consolidation had been planned, but this hardly seems to reflect the events of the first four months of the new fiscal year. As always, our endeavours have walking alongside families of seriously-ill children at its core and to this end we continue to expand not only the range of services available but also the premises from where our support can be accessed.
As is apparent from the photograph here, the fully funded extension to The Bluebells is rapidly becoming the space we envisaged, providing us with a wealth of facilities that will help us to meet the demand from visitors for well-being, advice, counselling, advocacy and guidance. We are very excited about how the new wing will finally look on completion and it is hoped our Remembrance Day event will take place in September in the ground floor space we have christened the Daisy Suite, in keeping with our botanical theme.
We are delighted with the rapid progress of our Family Outreach Hubs; the first in Slough, although in operation since last September, was officially opened by James Puxley, the Lord Lieutenant of Berkshire in May. The Hub has quickly established itself as a safe, welcoming and non-clinical environment where troubles can be shared, solutions to problems identified and stresses alleviated. The Hub has been particularly busy in the last month, with a range of events and workshops keeping seriously-ill children and their siblings active and entertained.
A smaller Hub opened last month at our offices in Bagshot, providing our Outreach Workers with a place in Surrey where one-to-one emotional, social and practical support can be delivered. From listening to our families we are aware of the need to offer a range of support options that can fit into already hectic, often overstretched family situations, so that family members can access help whilst at home, in hospital and in the community. Our Family Outreach Hubs also both offer a 24 hour telephone helpline service, providing a first response in critical situations.
One of the highlights of the Family Services calendar is the annual Christmas in July party, which took place recently at Marwell Zoo. Glorious weather and an enthusiastic Trust team greeted around 250 supported family members who enjoyed festive fun with Santa in the splendid surroundings of Marwell Hall. They were able to access games and entertainment in the Secret Garden as well as all of the attractions of the zoo. Being able to bring families together is another important aspect of our work; we understand that helping them to forge links and friendships with others who walk in similar shoes is key to reducing any sense of isolation and improving the feeling of being supported. We are always delighted to obtain feedback from our families- the following quote from Charlie McGowan is typical of the responses we have received:
"We had a wonderful time as did our 4 children. We are always excited in the build up to SAT families events because it's so nice to catch up with other families and see everyone smiling and enjoying special family time. Yet each event surpasses the last in way of the prefect organisation. Being at zoo was great fun in itself due to the animals, but then to be greeted so warmly on our arrival with our goody bag, packed with water and a map to keep us going on a hot day! We then visited the secret garden where our children got to have fun in a fete like atmosphere was such good fun! We had fun on the bouncy castles and Ollie even managed to throw a ball into the tilted bucket to great cheers from the guys running the games! The food and gifts were so greatly appreciated and so yummy! But my favourite has to be the community SAT builds amongst its families, wandering around the zoo we bumped into other families who all said hello and and greeted us like long friends even though we had never met in person. As always my family and I are eternally grateful for the charities continues support and wonderful hard work that goes into their events".
In light of the sudden demise of Kids Company we, like many charities, are reviewing our policies and procedures to ensure we demonstrate consistent and clear good governance. I am pleased to report that although we walk a constant tightrope in terms of securing income against our forecast we do currently hold three months’ operat ing costs in reserve, which acts as a contingency against any unplanned shortfall and thus provides a buffer against having to reduce service provision. Our Trustees and my senior management team constantly work towards achieving an agreed business plan which sets out the objectives for the year; we strive to ensure our supporters have confidence in our ability to deliver a robust service from an effective, efficient team and through internal and external audit measures we regularly challenge our practices to affirm compliance with Charity Commission and Companies House requirements.
In spite of the perceived economic upturn it is still a challenging and competitive market for charities. Without statutory funding we remain entirely reliant upon the generosity of our supporters and sponsors and the success of our own fundraising endeavours to bring in the £1 million required to provide 100+ respite breaks and 500+ day visits at the Bluebells, outreach support to more than 300 families, access to the wealth of services at our Family Outreach Hubs and activities and workshops for siblings, parents, carers and whole families. So whether it is organising a cake sale, taking part in a trek or challenge, joining us for a CSR day, adopting us as your charity of the year or becoming a regular donor- we hope you will continue to spread the word, support our cause and feel proud to play your part in the Sebastian’s Action Trust ‘family of families’. It is said people come into our lives for a reason, a season or for life- here’s to making our charity part of yours.
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.
What an amazing year we are having at Sebastian's Action Trust!
2014, as many of you are aware, is a special year as we are celebrating our first decade as an innovative, pioneering charity where the focus is on supporting the family unit, recognising the impact on each and every family member of a child with complex health needs.
Every quarter I take the opportunity to reflect on what is happening with Sebastian's Action Trust and to review progress against our yearly plan. Once again I am overwhelmed by the achievements of our incredible team who constantly strive to deliver above and beyond individual and collective goals, in the knowledge that ultimately we are developing and refining a service that has become a constant for so many seriously- ill children and their equally deserving families.
In the past few months we have extended our support in the following ways:
1. Our first Family Outreach Hub opened in Slough in September, which is available primarily to our Berkshire, Surrey and Bucks' families as a drop in centre where they can access many forms of emotional, social and practical support. This includes advice, advocacy and guidance, counselling, assistance with exploring funding options for specialist equipment and services, access to wellbeing and music therapy, bereavement care and a whole host of activities for both sick children and their siblings. The Hub is already proving to be a safe, comforting environment where troubles can be shared, solutions to problems identified and stresses can be alleviated.
2. Our Family Services team continues to expand with the recent addition of Katie Siviter, our Youth Worker, whose role firmly focuses on the junior members of the family. Offering one to one support and a range of activities and workshops, Katie has quickly found her stride in relating to young people, some of whom have now come together as the Trust's Youth Council. Working with Katie, the Council will help to define the future path of sibling and young people activities within our charity; we are delighted to offer a cross section of individuals with complex health needs and siblings a collective voice that will ensure what we offer is both current and appropriate to the often diverse needs of our service users.
3. Recognising that many Dad's feel unable to ask for or access support has prompted us to create the role of Dad's Worker as a further extension to our outreach team. We understand that many fathers either lack the time or inclination to engage in talk based group support, so Peter Boon, our Dad's Worker,is keen to bring this often hard to reach sector together through activity such as bowling, go- karting and table tennis. The Hub will provide regular Beer and Balls nights, allowing dads to come together for social interaction and hopefully a growing awareness that there is additional support available should they wish to access it.
Being able to expand our services from the initial concept of family respite breaks at The Bluebells to a joined up outreach provision for families when at home or in hospital is an ever evolving process. As an organisation that does not receive a single penny of statutory funding we are continually dependent upon the generosity of our supporters and our own fundraising endeavours.
Here are just a few ways in which we have benefitted financially from events in recent months:
1. Our inaugural Swinley Run was an outstanding success with around 400 competitors taking part in the challenging cross country course. One particular group, appropriately called Team Hollie, raised more than £5000 for the Trust in memory of Hollie Oxenham, whose beautiful face adorns the cover of our latest newsletter which is now in circulation
2. A Great Gatsby themed House Party in the sumptuous surroundings of the amazing Hedsor House gave guests a fantastic evening of entertainment whilst raising funds for the Trust. Organised by three of our most dedicated supporters( Helen Isacson, Heather Kent and Meirion Shaw) the party raised more than £15,000 as well as creating fabulous corporate partnership opportunities that will deliver longer term funding to sustain our work in the future.
3. More than £30,000 was raised at the Lochailort- Campbell Buchanon shoot.
4. A second Ladies Lunch at Coworth Park raised £2,000.
5. Our annual golf day at Mill Ride once again raised more than £10,000.
2014 has already seen many highlights for the Trust, perhaps most notably with the honour of being awarded the Queen's Award for Voluntary Service, which is commonly regarded as the MBE of the charity world. We do, however, still have so many exciting events to come:
I am thrilled to announce that on the 21st October we will be guests at Number 10 Downing Street at a reception hosted by Mrs Samantha Cameron. As a parent who has lived through the challenges of her son Ivan's complex health needs prior to his death in2009 we know the Prime Minister's wife is able to relate on a personal level to so many of the issues our families face. We are so pleased that representation from our families, volunteers, supporters and team will have the opportunity to join us at Number 10 for a celebration of the Trust's first decade.
As Sebastian's Mummy it is humbling to reflect on the impact of my little boy's last wish. To know that our collective efforts over the past decade have helped literally hundreds, if not thousands, who are living with the effects of a child's illness or death is both a privilege and an honour. Our book, entitled "from one little boy's wish..." is a collection of accounts from families, volunteers, supporters and many more who are all part of the growing Family of Families that is Sebastian's Action Trust. Compiled with infinite care by our very dear friend Sarah Clark, who was the journalist who publicly launched Sebastian's last wish shortly before his death back in 2003- this is a warm, compelling read and I hope you will want to buy your copy through our website or alternatively through in the very near future.
Sebastian may not have lived to celebrate his own tenth birthday but I feel sure he will be cheering us all on from his special vantage point, knowing there is still so much to be done whilst acknowledging the amazing feats that have happened in his name over the past decade. Thank you all who have chosen to become part of the fabric of our charity for your commitment, faith and unswerving support- without your love, friendship and loyalty we simply wouldn't be here today. Happy tenth birthday Sebastian's Action Trust- we are more than ready to meet the challenges of your next ten years!
With a robust calendar of celebratory events we knew that 2014 was going to be an exciting year for the Trust but we have been overwhelmed by an amazing initial six months. Ten years of providing emotional, practical and social support to families of seriously-ill and life-limited young people has been an enormous privilege; we are so proud to walk alongside our families from diagnosis, through treatment and beyond and our commitment to families remains steadfastly at the core of our operations. We know from some of the wonderful feedback we receive that our ever- evolving programme of services is much appreciated; for many we are considered a lifeline and a constant in lives that are frequently affected by unplanned change, worry and uncertainty. We remain focussed on listening to our families and responding with appropriate actions, helping where, when and how in order to meet the needs of whole families and individual members.
There have been many highlights over the past six months, too numerous to mention in their entirety, but here are a few of our favourites:
Outreach Services - Our service has expanded in 2014 with support from the Big Lottery, who have helped to fund some of our outreach team. Sue, Carla, Claire, Kelly and Peter, together with our Welfare Officer Jacquie now offer an outreach service to more than 200 families within the counties of Berkshire, Bucks, Surrey, Hampshire and Oxon. From listening to our families we have recognised the need to provide ongoing support beyond our family respite breaks at The Bluebells, so being able to extend our services to families whilst at home and in hospital has proven incredibly effective. We are pleased to announce that Katie will join us very shortly as our Youth Worker, with a Finance Worker to follow.
Blending our team with service user volunteers - We are delighted to see an increasing number of parents joining our team as volunteers. Tanya and Lyndsay are regular volunteers at The Bluebells, whilst Ben has become a befriender. Having our families intrinsically involved with the delivery of our service helps to keep us in touch with common issues, as well as being completely in keeping with our ethos that we are a “Family of Families”.
Our Families have a collective voice - In March the Bluebells’ Choir performed at the Mayor of Basingstoke’s concert at Festival Place. Parents, grandparents, siblings, children and members of the Trust team faultlessly sang Gary Barlow’s ‘Sing’ under the expert tutelage of parent Mark Halls and our Music Therapist Rebecca Pryce- there was not a dry eye in the house!
Our Garden of Reflection and Woodland Trail - Our amazing gardener Pam Duff continues to inspire and motivate countless volunteers to turn a stony, weed infested area into an incredible garden at the rear of The Bluebells. Our Corporates’ Officer Jo King has networked with so many companies who choose to give their time, energy and services to create a wonderful new area which will enhance the magical qualities of a visit to The Bluebells.
Creating networking opportunities through The Bridge - Our Policy Officer Kathryn Griffith successfully organised our first foray into networking with the inaugural Bridge event, which brought together service users and service providers with the aim of connecting relevant parties and improving understanding of the issues affecting both sides.
A reception on the terrace at the House of Commons - Once again our good friend Sir George Young kindly supported the Trust by hosting a reception to highlight the achievements of our charity over the past decade. With many of our families having the opportunity to meet many MP’s we were able to highlight some of the many issues that affect those caring for children with complex health needs.
Fundraiser of the Year! - Our Chief Development Officer Caroline Holton scooped the highly prestigious Gill Astarita’s Fundraiser of the Year award at the 2014 Institute of Fundraising awards. We are very proud of her much deserved accolade and are delighted to see she is a leader in her field.
We are recipients of the charity MBE - We are so proud to have been awarded the Queen’s Award for Voluntary Service. Recognising the commitment, passion and energy of our volunteers and staff, this achievement is a truly special endorsement of our cause and the people who make our charity such a unique organisation.
Over the past six months Sebastian’s Action Trust has been at the forefront of delivering a much valued service to families coping with enormous challenges on a daily basis. As always, we recognise the need to continue to find new ways to address the difficulties that affect our families and we are proud of our reputation for being proactive, innovative and responsive to critical need. We look forward to an action packed second half of the year and are so grateful to our supporters for their continued commitment to our cause. Sebastian would be so proud of all that has been achieved in his name- here’s to even more to come!
Last Saturday marked another first for Sebastian's Action Trust when our newly formed Bluebells choir experienced their debut public performance.
To rapturous applause the choir,ranging in age from three to sixty and comprising parents, grandparents, siblings and young people with complex health needs performed their rendition of Gary Barlow's 'Sing' at the Mayor's Concert at the Anvil Theatre in Basingstoke. In spite of only three group rehearsals the forty strong choir delivered a faultless performance to a visibly moved, dewy eyed audience.
Here is what just a few of our families have said about Bluebells choir:
"Well we're all still buzzing in the Thorne household from last night! Well done to everyone, amazing performance and super proud to be part of it. Britains got talent should hear bluebells choir!!! X" – Zoe Thorne
"So proud of my little boy, husband and Bluebells Families Choir. We rocked x x now for sleep and to attempt tomorrows challenge xx" – Lyndsay Dobson
"Last night the charity that support our family (Sebastian's Action Trust)- performed one song on stage at the concert hall in Basingstoke to 1400 people or thereabouts as part of the mayors concert. The families formed a choir of 40 parents and children and all three of my children were on stage. In event, I pushed Isaac onto the stage in his buggy sound asleep at 7.45- we couldn't keep him awake any longer ... But through the rehearsals that afternoon he held my hand on stage and jigged about and squealed or ran off. I kept waiting for someone to point out that the choir had worked hard on this performance and maybe I should remove Isaac so as not to ruin it. No one did. There was not so much of a hint of it. Children are unreliable . Any one of those special kiddos on stage could have lost the plot and screamed at the lights crowds and sounds , a good number of the kids are epileptic- any of them could have had a major seizure on stage at any point- maybe some did and I didn't notice , it could easily have happened. At least one parent was concerned their child could spontaneously start throwing up. Basically, as a group we were a set of disasters waiting to happen! But the group took a chance on Isaac, they took a chance on all of them, to say here we are, this is us, we stand together. That meant a lot to me. People mattered over perfection. But you know what? In the end, against the odds, a bunch of very unreliable kids and previously unmusical parents totally nailed it. We rocked. But I could be fairly certain if the worse had happened, three kids had fitted, three had screamed, two had vomited and Isaac had sang the Star Wars theme in the quiet bit then escaped and ran up to the lady mayoress and bit her on the bosoom- I kid you not, it was highly possible – they still would have stood together with us and laughed it all off. ( well... Maybe not the mayoress' bosom......)" – Claire Halls
We are proud to be a Family of Families. As a charity our ethos stems from a desire to give meaningful support to families by walking alongside them through the good days, bad days and everything in between. Much of what we offer is family- led; we aim to address unmet needs and that includes finding ways to make fun experiences whole family inclusive in spite of disability or complex needs. In response to countless requests we will work towards making the Bluebells choir a regular feature in our programme of activities for families who face enormous challenges on a daily basis, so that every family member can sparkle and shine.
Our house manager at The Bluebells, Lauren Harris, hosted our Mums Pamper Day last week at the house and has written our latest blog piece highlighting the day and how the mums enjoyed their time away.
"On Saturday 15th March, a group of 26 Mums of our seriously ill children, came to The Bluebells to enjoy a whole day of pampering. The ladies came from Hampshire, Surrey & Berkshire to enjoy some time to recharge their batteries. They had a 'Temple Spa' facial class where they were able to try the luxury products out on their skin, making them feel nicely relaxed. They also enjoyed Manicures, Pedicures & Massages throughout the day. The Bluebells team put on lunch and afternoon tea – the weather was kind to us, so they were able to enjoy the peace relaxing in the garden."
Throughout 2013 we provided:
- 115 family respite holidays at The Bluebells
- 314 single day visits to The Bluebells
- 12 activity days, involving 564 individual family members
- 31 transport days involving 248 hours' support
- 129 wellbeing therapy sessions involving 246 hours' direct family support
- 118 sessions of music therapy, including continued courses for 6 children and a further 4 bereaved siblings
- 91 sessions of art therapy, including a continued course for 2 children
Why? With the rain lashing down and fierce winds, why am I dragging myself out of bed at 6 o’clock in the morning to run 8-10 miles in the dark? Why? – Training for the London Marathon. But standing at the end of the run, exhausted and soaking wet, looking like a dog that’s just been for a dip in the local stream, that didn’t really provide any solace. On reflection it’s not just ‘why’, more a question of ‘reason’ and ‘motivation’.
The reason, simple on the surface, is to raise money for Sebastian’s Action Trust – or more to the point, to raise funds in order to help provide families of seriously-ill children with practical and emotional support. Dig a little deeper and it’s about doing something that will go towards creating opportunities for these families to have quality time together to relax, recharge and rebuild, never having to face life alone.
The motivation comes from the memory of my little hero and baby boy, Beni, who died Christmas-time-before-last when he was only 18 months. To simply survive each day he had no other choice than to give his all. Beni had Myobular Mopathy, a condition that causes muscle weakness. Just breathing is a fight, let alone developing his strength so that he could sit up, hold his head up, learn basic sign, make his voice heard, or simple smile. If Beni, a little boy suffering from a life threatening condition could achieve so much, then I can run 26 miles!
So there I am, 4 times a week, out with my training partner Willow, my 9 month old dog (a white lab cross, but reminds me of the HMV dog), dressed in my luminous t-shirt, luminous running jacket and luminous hat, appearing as some throw-back from the late eighties, gradually extending the distance each week. Long runs are reserved for Saturday’s with shorter runs Tuesday, Wednesday and Thursday. Right now my long run is up to 16 miles and I’m trying to deal with the prospect that on the day I’ll need to run a further 10 miles! This weekend, however, I’ve only got the 13 miles of the Reading Half Marathon to contend with.
It was way back in September when I signed-up for the Reading Half. While I’m fairly sporty with football and squash, I’m not a runner. So when asked in the application form how fast I’d completed the half marathon I had no real idea. “3 hours?” Feedback from friends, colleagues and loved ones was pretty unanimous: 3 hours for half a marathon is quite slow. Remembering this advice, when I completed the sign-up for the London Marathon, I took a slightly different approach and asked myself “How quickly could Mo Farah run it?” – 2 hours? Acknowledging that Mo is slightly out of my league, but thinking I can’t be so slow that it’ll take me twice as long, I said “3 1/2 hours”. Turns out, that 8 minute miles is quite fast for a novice runner!
Months lapsed, Christmas came and went, but the training had yet to start. That’s when the panic started. Perhaps I wasn’t appreciating how hard preparing for and running the marathon would be. So with 14 weeks to go, I hit to the road to gauge where I was at. 8 miles in 1hr 10 mins (8 3/4 minutes per mile). A quick search of the Internet and I’m delighted to find it’s exactly where I’m meant to be. But If I’d left starting training for another week, it would have been difficult for me to be ready in time. Now, with 6 weeks to go, I’m still on track and running at an 8 minute mile average.
Please take the time to sponsor me at www.justgiving.com/marathon4sebastians, and why not make the trek to Reading this Sunday (2nd March) to cheer me on in the Reading Half Marathon – I’ll be the one in the Sebastian’s Action Trust top. - Stuart Hall-Cooper
Sebastian’s Action Trust like to regularly feature some of our families that we help to highlight not only the work that we do, but also raise awareness of some of the illnesses that our children and their families face every single day. The Whaleys from Eastleigh in Hampshire are one of the many families that have used The Bluebells as well as our Family Outreach Service and they are the focus of this weeks blog.
Ricky Whaley is now twenty one-years-old and he is unique in that he is the oldest, seriously-ill person that our Family Services Team support. Ricky suffers with a very rare and severe form of Epilepsy known as West Syndrome that is extremely difficult to treat. The syndrome starts very early in life and to raise the chance of successful treatment and keep down the risk of longer-lasting effects, it is very important that the condition is diagnosed as early as possible and that treatment begins straight away. However, there is no guarantee that therapy will work even in this case. He also suffers with Global Developmental Delay (GDD) that affects his essential physical development such as motor skills, speech and language, cognitive skills and basic social and emotional development. This has meant that Ricky is wheelchair bound and needs round-the-clock care.
Despite the obvious hardship that Ricky and his family face on a daily basis it was wonderful to listen to how positive and enthusiastic his mother Sonia was when we spoke to her about Ricky and the services that Sebastian’s Action Trust provides. “Everyone is caring and sensitive towards the families that stay at The Bluebells. Everything, no matter how small or seemingly insignificant, is catered for. The accommodation is state of the art and the hydrotherapy pool is magnificent. Ricky finds big crowds overwhelming so he loved his one-on-one music therapy session as well. He normally hates loud noises but he really responded to the Music Therapy which took us all by surprise. The setting, the grounds and the friendly atmosphere were just perfect” Ricky is also something of ladies man it seems. He likes nothing better than to be in the company of females (particularly blondes!) and is a very loving and tactile young man. “He loves people’s faces” Sonia explains. “And if he likes your face he is most content being able to touch it and enjoy that physical connection with others”. Beyond his penchant for the ladies Ricky loves swimming and enjoys just being out and about.
The Whaleys have enjoyed a holiday at the Bluebells in 2012 and have attended some of our fundraising events and family days such as our Christmas In July party. They have also received home visits from our Family Services Team and Sonia has also made use of the well-being therapy treatments. “It was so nice to have something so simple like a back and neck massage and a pedicure. Something I have not had for years and I had forgotten how great these treatments make you feel” she said. “The work Sebastian’s Action Trust do is so wonderful and we will always be grateful for everything they have done for us”.
Through our Family Services Outreach service we offer a range of emotional and practical support initiatives to help families of seriously-ill children cope with the stresses and challenges that invariably accompany their situation. This includes: - Sibling support- to help brothers and sisters have fun, share experiences and benefit from peer support - Activity days, workshops and drop-in sessions- opportunities to tap into a range of initiatives for children, parents, grandparents and carers. - Welfare advice, guidance and advocacy- to help families steer through the maze of organisations and procedures needed to find appropriate support for their situation - Help at home- a listening ear, with bespoke care and support to individual family members as well as the family unit - Well-being therapy- a range of therapies offered to parents and primary carers to help alleviate some of the stresses that come with caring for a life-limited or seriously-ill child - Psycho-social support – through our monthly Chill and Chat sessions and access to counsellors and psychologists, we aim to offer coping strategies, professional advice and a confidential space to discuss matters affecting individuals or families - Bereavement care- our commitment to our families continues after the loss of a child, for as long as the family wish.
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.