Sophie Rolf Update

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

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Sophie Rolf the beautiful butterfly at the Bestival last year

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

Sophie Rolf is Flower Girl for Auntie Lucy

Our little girls strength and determination is beyond words. The more poorly she becomes it seems the more determine she gets. This afternoon after suffering a seizure last night and sleeping most the morning she put on her pretty dress and walked down the aisle as a flower girl for her Auntie Lucy. So proud of you Sophie xxxx

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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 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

Sophie Rolf has a new pet

Meg Bhari & Jean Stanton Sophie seems to have a new pet! He is very friendly and been everywhere today with her.. Hmmmm What can I say about you too….. I shall start with Thank you xx

Gemma and Aaron (mum & dad)

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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 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

Sophie Rolf and her morning bake off with daddy

Sophie and mine’s morning bake-off….a banana loaf! Watch this space to see the finished article…

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Tadaaaa!! Finished article and although a slight error in getting it off the baking paper not a bad effort altogether I would say!!

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My first foray into the world of banana loafs is deemed a success…..in no small part thanks to Sophie’s skills with a whisk!!

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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 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

Sophie Rolf is magic

Sophie very kindly informing me that her feet have disappeared but luckily she is still able to walk as she is magic…….apparently!!!

Aaron (Dad)

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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 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

Sophie Rolf and her Princess Garden

A great addition to the Sophie Rolf Princess garden. Amazing work Sheila Hanley

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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 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

What a week for Sophie Rolf

What a week…Our little girl is such a fighter despite everything that has been thrown at her this week the increasing seizures and now the return of shingles today she manages an hr out for tea with her friends at Zara’s house. So excited and happy! Heartbreaking but at the same time lovely to see her still smiling… Xx

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 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

Balloons for Sophie Rolf

Apparently the world is going to run out of Helium by the year 2030?! Well just give me a ring whenever you need some…..

Aaron (Dad)

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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 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

A Week on Chemo takes it’s toll for Sophie Rolf

Day 4 of the last 5 days of Chemo and Sophie Rolf has finally given in to the side effects! Not bad only taken her 13 months! Which in its self is an amazing achievement.. Only one more day to go which we wish we were celebrating instead will be nervously awaiting her MRI Scan on Tuesday.

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 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

Funny faces with Sophie Rolf

Sophie Rolf showing me earlier her many many faces that she has to get right since she has become famous!! We have …

1) rude face

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2) sad face

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3) happy face

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4) sleepy face

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Hmmm a Bafta next maybe?

Aaron (Dad)

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