Here for families of seriously-ill children. Always.

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An open letter to our founder from our CEO

Dearest Sebastian,

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,

Mummy xxxx

 

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A family of four forever 

 

  

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