Magnificent Quilt Raffle for KissyPuppy

“Vectis Quilters are this summer offering this magnificent quilt as the prize in a raffle organised to support the work of The Sophie Rolf Trust.”
Tickets are just £1
Raffle tickets on sale in the following locations :

Sat 24 May – Red Funnel

Sat 31 May – Red Funnel

Fri 30 May – Morrisons – Lake

Sun 1 June – Morrisons

Fri 13 June – Tesco

IMG_2208-Poss-too-big001 IMG_2216001 IMG_2276001 

Our Story

The Sophie Rolf Trust – Registered Charity 1156155

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 September2011, 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. 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.

www.justgiving.com/EMH-KissyPuppy

Bestival Tickets Raffle for Sophie Rolf

A massive Thank you to the Bestival for giving us a Family Camping ticket to give to a lucky family at the Hospice Summer Party last Saturday. The family who won however have very generously have donated the tickets back to Kissypuppy to raffle and hopefully raise some more funds for development of Children’s Services at the Hospice on the Island. Not only will you be supporting a great cause but be in for a chance to win a great prize.

Gemma (Mum) xx

To win family camping tickets go to the Beautiful butterfly Bestival Tickets Raffle group on facebook organised by the wonderful Michaela White

If the link does not work above copy and paste the link below

https://www.facebook.com/groups/656742394337397/

Bestival-2013

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.

www.justgiving.com/EMH-KissyPuppy

The Crispin Mini Festival

Charity Event in Aid of KissyPuppy, The Sophie Rolf Fund on 25th August 2012

Live Music from 12pm – 12am at The Crispin Pub in Newport with

Kickback
Beano
Cardinal Richilieu
Jack Gorman
Victoria Clarke
Fly Catchers
Ben Stubbs
Dave – Skin Deep

Have a go in our massive raffle!
Loads of great prizes!
£2 per strip
£5 for 3 strips

Sophie Rolf Fund

Sophie Rolf is a happy go lucky, always smiling, little bundle of joy (most of the time!). In June 2012, 2 months before her 5th birthday, she was diagnosed with an agressive brain tumour. It is early days, and Sophie’s family are still discussing the prognosis with Doctors and seeking further opinions on treatment options.

We have set up KissyPuppy kindly supported by Brainstrust, to create a mechanism for friends and family to fund raise for Sophie. The money raised will be used to support Sophie’s journey through this. It may be used to fund travelling to and from appointments on the mainland, any equipment needed, it may be used for treatment not funded through the NHS or just to ‘Keep Sophie Happy’ by paying for things she likes to do.

We chose the name KissyPuppy as this a word Sophie uses for a very special sort of cuddle and kiss reserved only for her big brother Jack.

Coffee Morning and Cake Sale

Sophie’s Day – The theme is purple

We shall be having a coffee morning, cake sale and raffle at Westview House, Ward Road, Totland on Friday 17th August.

KissyPuppy

KissyPuppy

Also hope to get my clients to make some bracelets to sell. The staff will have to pay £2 to have the privilege of wearing purple for the day.