This time last year we were like any other family looking forward to the weekend. A year on, on Monday Sophie has a MRI Scan exactly a year to the day she had her first. The day our life’s changed forever. During the last year Sophie has faced things that no child or adult should have to go through. Neuro Surgery to fit shunts, Central Line Surgery, Radiotherapy, Chemotherapy, Trial Drug, numerous MRI & CT Scans, homeopathic drugs and other tests all with determination, strength, courage and most of all always a smile. She has made us so proud to call her our daughter.
Living everyday knowing there is nothing you can do to cure your child, watching her play with her big brother Jack knowing one day he will lose his little sister is heartbreaking. Whilst we struggle to accept this or see this happening to our little girl we have been forced to think about certain things no parent should have too. Making decisions on your daughter’s life with not knowing if the decisions are the right ones have been the hardest we have ever made. All we can say is we belief we have tried to make the right ones and give Sophie the best chance and will continue to fight every day to save our daughter. Sophie & Jack are our world, our most precious and loved beyond words. On Monday, as with every scan we will put a brave face on, lay Sophie on the scanner bed pretend everything is ok and pray for a miracle.
On a personal note I would like to thank everyone for all their support during this last year. It has been amazing and without you all things would have been so much harder. A special thank you to Aaron you are the most incredible Dad a child could want for and are a saint for having to put up with me and my hospital phobia too!
Everyday…. holds the possibility of a miracle…. Love you Sophs xx
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.