Sophie Rolf MRI today

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.

Sandown-Zoo-0378-29052013

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.

www.justgiving.com/EMH-KissyPuppy

One year on with Sophie Rolf

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

Mum (Gemma)

Sandown-Zoo-7340-29052013

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.

www.justgiving.com/EMH-KissyPuppy

Sophie Rolf & Friends at M&S

Sophie Rolf and friends will be collecting for KissyPuppy at Marks and Spencers from 10am to 4pm this Saturday 25th May 2013. Sam Sheasby will also be joining them to play between 1pm and 2pm. Please come down and support them in this amazing cause. Sophie is very close to achieving the initial £10,000 to create a space into a child friendly residence on the Earl Mountbatten Hospice site, not just for Sophie, but for other children and families who may need this service in the future.

TomsEcoLodge-9803-11052013

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.

www.justgiving.com/EMH-KissyPuppy

309 Mile Cycle for Sophie Rolf

Theo Krekis, James O’Flynn and Dean Moore are going to be cycling from Leicester to Falmouth in July over the course of 5 days for Kissy Puppy – The Sophie Rolf Fund.

The cycle is scheduled to take 5 days.

Day 1: Hinckley to Tewkesbury (72 miles)
Day 2: Tewkesbury to Bristol (49 miles)
Day 3: Bristol to Taunton (55 miles)
Day 4: Taunton to Okehampton (60 miles)
Day 5: Okehampton to Falmouth (73 miles)

If you wish to sponsor Theo, James and Dean please go to www.justgiving.com/EMH-KissyPuppy and put in the comment box that it is for Theo.

photo

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.

www.justgiving.com/EMH-KissyPuppy

Sophie Rolf getting big cuddles from Mum

Sophie Rolf with Mum Gemma

Something’s you wish you could keep forever…. X

Gemma (Mum)

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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.

www.justgiving.com/EMH-KissyPuppy

Sophie Rolf is Captain Star Wars

Sophie Rolf telling me that she wasn’t Sophie but in fact “Captain Star Wars” ….& it wasn’t her bed time as she had to go “pound Jack cos he was smelly”!!

There isn’t a second goes by that I don’t wish I could trade places with her and give her the life she deserves…. Xx

Aaron Rolf (Daddy)

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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.

www.justgiving.com/EMH-KissyPuppy

Sophie Rolf with her very own fairy godmother

Sophie Rolf and her very own, very favourite “fairy godmother Meg Bhari”.

Aaron Rolf (Daddy)

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Jean Stanton and I have had an amazing day with the wonderful Gemma Blamire, Aaron Rolf, Jack and Sophie today!! Even managed 1000 hugs from Sophie and one from Jack too!!! You are all so incredible and we love you to pieces, Thank You for such a lovely time!!!!     XXXXXXXXX

Meg Bhari

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.

www.justgiving.com/EMH-KissyPuppy

Indian meal at 3 restaurants fundraiser for Sophie Rolf

Jimmy and Munshur Miah are holding a fundraising event at the Tamarind and Nabab restaurants in Newport and the Island Spice at the bottom of Union St in Ryde on Thursday 27th of September at 7.30 in aid of Sophie Rolf.

The food is being donated by the restaurants and there will be an entrance fee of £13.95 for a set menu of starter, main, rice and naan bread.

To book in to a restaurant call;

Tamarind 01983 526777
Nabab 01983 523276
Island Spice 01983 810705

Until very recently Sophie Rolf was a happy go lucky little 4 year old girl living on the Isle of Wight with not a care in the world.

During May 2012 a Sophie ‘s parents noticed a tremor in her left arm and after numerous hospital visits and finally an MRI scan in June, the family received the terrible news that Sophie has brain cancer.

Sophie has an aggressive brain tumour and was set a course of radiotherapy, chemotherapy and was accepted on a drug trial within weeks of diagnosis.

We have set up KissyPuppy as a mechanism to fund raise for Sophie. The money raised will be used to support Sophie’s journey through this and to ensure Sophie and her family get as many magical experiences as possible.

Birthday Party Fun

With two huge birthday’s to be celebrated this week the family organised a party at the West Wight Football Club for Leonie’s 21st and Sophie’s 5th birthdays. A huge blow up slide, bouncy castle, waterslide and Cinderella doing make-up, face painting and tattoo’s it was to be a fantastic party on probably the hottest day of the year.