Where is Sophie Rolf?

Apparently, according to Miss Bunny, “Sophie Rolf is not in her bed at the moment but actually at the hairdressers!”…

Thanks for that Miss Bunny

Aaron (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 Naomi’s House in Winchester for respite or end of life care, which for Sophie and her family would be a three hour journey each way.

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 by 2015.

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.

The severity of Sophie’s rare condition means that in the interim, a space may be needed to support Sophie and her family in her final days.

KissyPuppy is raising money for the Earl Mountbatten Hospice. This could go towards things like transforming a space into a child friendly residence that would bridge the gap whilst new long term services are developed on the Isle of Wight.

Donations would be very much appreciated and we thank you for your continued support.

www.justgiving.com/EMH-KissyPuppy

Fun in the pool for Sophie Rolf

Well worth all the risks to see Sophie doing what she always loved the most Swimming! A very tired but happy Sophie tonight..

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 and Hamley Bear

Just getting ready for our private shop at Hamleys before ice cream at Harrods!! Is there any other way to do London than this?!!!

Sophie & Hamley bear having a dance off!!

Aaron (dad)

1014195_10200946283232800_1845009621_n

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 staying strong

Update on Sophie Rolf’s last couple of days over at Southampton Hospital from dad Aaron

A helluva day at Southhampton Hospital!! The plan was simple – get the call with Sophie’s MRI results before heading over this afternoon where her chemo would be ready and waiting!
The reality – chase hospital all morning with no luck so go over for chemo only to be told not made and wouldn’t be ready until tomorrow!!

In addition to this they are in the middle of switching their computer analysing system so are unable to give comprehensive results of her scan! However the preliminary findings are that there may be a very slight increase in the size of her tumour. Approx 10% however this is worst case scenario and may be less. For a tumour to be “progressive” and for treatment to stop it has to have increased in size by 25%. So not the greatest news but certainly not the worst!

Sophie’s consultant is still extremely happy with the way she is responding to everything and even called her the “Star Patient” and although we are bias we would have to agree!

On being told we have to go back tomorrow for a third day running Sophie’s response was simply “..ah well Dad, it’s only one more day it doesn’t matter..”
With an attitude like that how can I be anything less than magnanimous?

Thank you from all of us for all your kind words, prayers & positive thoughts…

Bestival-1143

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 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

A Really Special Memory of Sophie

Amazing dancing by Georgia and seeing Sam taking Sophie on the ice to his song about her is a special memory we will not forget.. X

Gemma (Mum)

Skating Gala-9515-10052013

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 ‘s latest creation

Sophie Rolf ‘s latest creation at the classroom on the ward whilst waiting for her consultant….

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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 getting big cuddles from Mum

Sophie Rolf with Mum Gemma

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

Gemma (Mum)

428721_460773700663437_299753330_n 482544_460773723996768_668007281_n

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