Sophie Rolf was a beautiful, happy, larger than life little girl. She enjoyed doing all things little girls love, especially her swimming and dance classes. Sophie started school in September 2011, joining her big brother Jack at St Saviours Primary School in Totland on the Isle of Wight.
During May 2012 we noticed a tremor in Sophie’s left arm and, after numerous hospital visits and finally an MRI scan in June, we received the terrible news that no parent wants to hear – Sophie had a ‘Supratentorial high grade Glioma, bilateral thalamic tumour’. This is an aggressive brain tumour located in a very awkward part of the brain. We were told that the tumour was inoperable and the prognosis poor.
Sophie faced things that no child or adult should have to go through. Neuro surgery to fit shunts, central line surgery, radiotherapy, chemotherapy, a trial drug, numerous MRI & CT scans, homeopathic drugs and other tests were all met with determination, strength, courage and most of all always a smile. She made us so proud to call her our daughter. As a family we never gave up hope and actively pursued other medical opinions from Europe and the rest of the world – however each reply reinforced the original diagnosis.
Sadly Sophie lost her fight in November 2013 at home alongside her family that adored her so much. She didn’t suffer and as always, she decided when the time was right.
‘KissyPuppy’ was originally set up to enable friends and family to fund raise for Sophie and initially was used to support Sophie’s journey through this including travelling to and from appointments on the mainland, any equipment needed and creating magical experiences and memories. We chose the name ‘KissyPuppy’ as this was a word Sophie used for a very special sort of cuddle and kiss reserved only for her big brother Jack.
What this devastating process highlighted to us as a family was the limited healthcare options available for children with life shortening conditions on the Isle of Wight. There is no specialist children’s hospice on the Isle of Wight. Families are offered the option of travelling to Winchester for respite or end of life care, which is a three hour journey each way, relying on Ferries. Travelling to the mainland at the point when Sophie was very poorly is something we did not want to be thinking about.
The Earl Mountbatten Hospice provides comprehensive end-of-life healthcare for the Isle of Wight community. They support and care for adults living with and dying from a life-shortening illness and, working in partnership with the local NHS, they are extending these services to children.
Sophie said early on in her treatment that she wanted to help other children as they have helped her………so that is what we have pledged to do. We have joined forces with the Earl Mountbatten Hospice and the local NHS to help support and develop services on the Island for children and young people, and their families, with life shortening conditions. Over a period of time a range of services will be developed offering flexible, individualised care and support, in the place of choice, built around the unique needs of each family. Services will be coordinated centrally, and delivered by a multi-professional team, working together with each family to support their wishes and care choices.
Sophie’s first project was to provide an area within the existing hospice building that will be suitable for use by children and their families. The area was to provide the equipment needed to fulfil the medical requirements of the individual whilst at the same time recognise the needs of the family as a whole.
From day one Sophie was an inspiration to all. She never once complained or grumbled about what she was going through. She greeted each and every day with a smile and her attitude and spirit made her fundraising such a success that within a few months she had raised the £10,000 target set for the first project.
At the beginning of November 2013 Sophie, just a few weeks before she passed away, opened the children’s rooms at Earl Mountbatten Hospice, a massive achievement of which we are so proud of her for.
Sophie had already started on her next project, a Playground, within the grounds of the Hospice. In her short life, Sophie has changed Children’s services here on the Island. Since her passing we have continued to support EMH, NHS and Community Nursing Team in developing and improving existing services or funding new ones.
Our “achievements” to date have included the initial funding of the Hospice rooms including specialized medical equipment, the children’s playground, one years’ worth of funding for the Schools Project (involves inviting primary schools into the hospice to “re-educate the children AND their parents about what goes on in there and hopefully alter any misconceptions they may have). We have recently funded the new Bereavement Service which was launched at the start of 2017 which is an island wide service – although aimed at children and young adults it will in fact assist anyone affected by bereavement in any way. Our latest “spend” is a specially adapted vehicle which we have purchased and given to the respite nurses so they are able to take children out and about without relying on NHS or EMH vehicles and drivers. In addition to this we got the Respite Nurses an office within the Hospice and purchased office and computer equipment – this puts their base of operations right where it’s needed most; within the hospice.
We have also provided arts, crafts, toys and sensory equipment for the Respite Nurses to use with the children under their care. We have also funded Easter and Christmas parties for these families and paid for the entertainment and Christmas gifts for the children and siblings.
Alongside all of this we ensure that above all the funds are in place should the rooms be needed for end of life or after life or just respite? The funds for this come solely from us and as an example the cost of one child/family using the rooms can be in excess of £20k….and this is just for one child. Within the last few months the respite nurses have actually taken children under their care within the hospice to administer the respite rather than just at the patient’s home.
The Earl Mountbatten Hospice is the ONLY adult hospice that now cares for children as well and in 2015 they won the Annual Hospice Innovation Award based around the partnership it shares with us and the Islands Paediatric team. The awards recognise the contribution both individuals and innovative programmes have made to hospice care in the community.
We, as Sophie’s family, recognise there is so much more to be done. Kissypuppy ‘The Sophie Rolf Trust’ is now a registered charity. We are committed to helping the Earl Mountbatten Hospice, local NHS and other interested parties in the continued development of services for children and their families with life shortening illnesses on the Isle of Wight. We hope we can continue Sophie’s good work and make a legacy she would be proud of.
25th November 2017:
On the fourth anniversary of Sophies passing we announced our biggest project to date. Continuing with our award winning partnership with Earl Mountbatten Hospice KissyPuppy will fund a bespoke area for children and young people in a separate building on the hospice site where they can receive day respite, social and emotional support sooner after diagnosis. A number of new spaces for children and young people will be included; such as rooms for work groups, relaxation, therapy rooms and areas for socialising.
We have pledged to donate £300,000 towards the new children’s area, part of the much wider project to redevelop Oak House.