Sebastian’s Action Trust Butterfly Lodges

Sebastian’s Action Trust works to support families of seriously-ill and life-limited children, from diagnosis, through treatment and beyond. We provide a myriad of emotional and practical support to our families; wherever and whenever they need it.

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Project information

  • Location of project
    Basingstoke, South East

  • Submitter
    Georgina Pedley

  • Award category
    Regional Project

  • Prize won

Project Introduction

The flagship of our service provision is The Bluebells, the UK’s only respite holiday home which has been designed exclusively for families with seriously-ill children. Here, our families are able to take a vital break from gruelling hospital routines, in order to spend time together relaxing and having fun. The House contains everything the family may need for a holiday, including a hydrotherapy pool, sensory room, art and music therapy rooms and well-being suites for tired parents and carers. Our more local families are also able to access our facilities on a day-to-day basis, so that they are always able to benefit from the unique facilities we have on offer.

Our promise is that we will continue to be there for families of seriously-ill children, always. A part of this promise is that we will continue to support our families, even if they tragically lose their child. We understand that this is the hardest time for our families, yet it is also a time when many other service providers retract their support; leaving the families alone to cope with their loss. We will continue to provide the same level of emotional and practical support, as learning to deal with the death of a child or sibling is a long and complicated process which cannot be rushed. Our Outreach Workers will provide one-to-one support for each member of the family, and we host an annual remembrance day in The Bluebells garden to give our families a chance to celebrate the life of their child, and grieve their loss in the company of others who truly understand their pain.

Our bereaved families are also welcome for a stay at The Bluebells. However; currently they are staying in the main house which may bring back very painful memories when they are surrounded by places their child used to enjoy. We would like to build two lodges in the grounds of The Bluebells, so that our bereaved families will have a space of their own to spend time together as a family. Although they will be able to spend time away from the main house, they will be welcome to access all of the facilities we have available there; particularly the well-being suites and counselling rooms, where they can receive one-to-one emotional support. Our trained bereavement support workers will also be on hand throughout the duration of their stay, so that there is always someone ready to provide advice and support. These lodges will be known as the Butterfly Lodges; as we refer to the children who have passed as ‘butterflies’.

These Lodges are a necessity for our bereaved families, who so often have nowhere to turn after they have lost their child. They will ensure that these families know that they always have somewhere to turn for help and advice. As the loss of a child can place such an emotional strain on the family, it is vital that they have somewhere they can spend time together, and these Lodges would offer the ideal location. Families tell us they value the sense of inclusion that comes with being part of our charity, but with the numbers of bereaved families inevitably escalating, year on year, it is difficult to see how we can continue to meet their needs without more capacity to accommodate additional families staying at The Bluebells.

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