These last couple of weeks have shown Sophie’s condition take a turn for the worse and although still she doesn’t complain or grumble it’s taking its toll.
The seizures are unpredictable and really drain her energy and alongside that she is now losing strength in her left side…….yet she still tries her hardest to do everything that a “normal” six year old does!
She hasn’t asked why she can’t do stuff and still talks about going to school and starting gymnastics and trampolining again and hearing her talk like that is the hardest thing we have had to endure so far.
We have two fantastic fund raising events at the moment. Firstly there are almost 40 of us running the Great South Run in October ……in purple butterfly wings if uncle Steve Blamire and auntie Helen Figgins have anything to do with it! Secondly is the online auction that opened this evening. There are some tremendous items that have been so kindly donated ……just take a look and you never know?!
As our beautiful butterfly continues to try and fly no matter what hardships do their best to ground her it is events like this and everybody’s generosity and kindness that make our lives that little bit more bearable and for that we shall be forever grateful.
Aaron (Sophie’s dad) x
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 poor. What this devastating process 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 Naomi House in Winchester for specialist respite or end of life care, which for Sophie and her family would be a three hour journey each way.
The Earl Mountbatten Hospice (EMH) 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.
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 EMH, to create an Island based solution that would support children on the Isle of Wight with life shortening conditions.
The EMH project aims to bring together locally provided and family led palliative care services for children, teenagers and young adults on the Isle of Wight. EMH is working with the Isle of Wight NHS and other local groups, organisations and Island families to make this happen.
Over a period of time a range of services will be developed offering flexible, individualised care and support, in the place of choice, and built around the unique needs of each family. These services will be coordinated centrally, and delivered by a multi-professional team, working together with each family to support their wishes and care choices and will extend to friends and all those involved..
EMH is already setting up a Family Network to bring together Island families who are affected by life shortening conditions and to provide them with help and support through their Information & Support Centre in the John Cheverton Centre.
Donations would be very much appreciated and we thank you for your continued support.