A message from Aaron (Sophie Rolf’s Dad) last night
On the eve of Sophie’s next MRI I wanted to say a few words about the last 12 months. Sophie’s mum (Gemma Blamire) summed it up beautifully.
I know it has been written so many times before but the smile that Sophie wears on her face every single day has given me the strength to carry on. The strength to get up each morning. The strength to accept this life I have been dealt.
We have not given up hope and we still search daily for the chance of a miracle – whatever happens I want to be able to at least know that we did everything possible to beat this terrible disease.
I would change places with her in a heartbeat – to give her the life she deserves is my greatest wish. As a father I am supposed to be able to keep my children safe and in that respect I have failed – this is not me wallowing in self pity but simply stating how I feel.
Thank you to each and every person who has supported us. Be they family, friend or complete stranger that has donated time, money or simply prayers or thoughts we, as a family, will be forever in your debt.
Whatever the next twelve months may bring then so be it. If Sophie can face everything with courage, dignity and above all a smile I would be doing her an injustice if I were not to do the same.
Sophie Rolf is a beautiful, happy, larger than life little girl who, a few months before her 5th birthday, was diagnosed with an inoperable brain tumour. She has responded to therapy well and most importantly with courage and a smile that has inspired all of those around her.
Unfortunately the prognosis is still poor. What this devastating process has highlighted to Sophie’s family, is the limited healthcare options available for children living or dying from life limiting conditions on the island.
Currently, children from the Isle of Wight travel to Winchester for respite or end of life care, which for Sophie and her family would be a three hour journey each way.
The Sophie Rolf fund, KissyPuppy, is raising money for Earl Mountbatten Hospice to create an interim Island-based solution to support local children and young people with life-limiting conditions.
The Earl Mountbatten Hospice is an independent charity providing comprehensive end-of-life healthcare for the Isle of Wight community. They support and care for adults living with and dying from a life-limiting illness and they are looking at how they can extend these services to children.
The Hospice is working in partnership with Sophie’s parents, and other interested organisations and families on the Island, to research both the need and opportunity to develop its services in the future to include children and young people.
Earl Mountbatten Hospice is committed to improving the range of services and facilities to meet palliative health and social care needs of children and their families and carers on the Isle of Wight in the long term.
The severity of Sophie’s rare condition means that in the interim a place may be needed at the Hospice to support Sophie and her family in her final days. Currently Sophie must travel off the Isle of Wight for much of her treatment, the nearest hospice for children is based in Winchester.
The initial target is to raise £10,000 for Earl Mountbatten Hospice to transform a space into a child friendly residence on the Hospice site, not just for Sophie, but for other children and families who may need this service in the future, would bridge the gap whilst new long term services are being explored.
We appreciate the phenomenal support for Sophie and her family from the Community on the Isle of Wight and the wider support we have received. We would now like to raise funds together with the Earl Mountbatten Hospice, to create an Island based solution that would support children on the Isle of Wight with life limiting conditions and provide end of life care.
Donations would be very much appreciated and we thank you for your continued support.