Here for families of seriously-ill children. Always.

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support for bereaved families


A message from Jane, our CEO

What an amazing year we are having at Sebastian's Action Trust!

Front book

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!







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