Phoebe Flo Fund
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My name is Rhys Norris and this is a campaign to raise essential funds for my 5 year old niece Phoebe Read from Swansea in the UK.
Phoebe was diagnosed with a very rare inoperable brain tumour in October 2015. She has undergone radiotherapy to try and reduce the size of the tumour but this has only bought time and temporarily reduced the symptoms.
Her illness is called Diffuse Intrinsic Pontine Glioma and affects less than 40 children a year in the UK. The tumour's location means that it cannot be removed surgically and chemotherapy medication cannot reach it.
Until recently there has been no hope however out of the blue the family have been made aware of a surgeon in Bristol who is developing a new form of treatment specifically for children with Phoebe's condition. This treatment is so new that there have been no clinical trials however some children have already accessed treatment on an individual basis.
The surgery is expected to cost around £40,000 with likely ongoing treatment costs and sadly a funding request has been declined. This means we now have to find ways to raise the money ourselves.
Phoebe is such a beautiful, funny and caring girl and brings joy wherever she goes. She has been incredible throughout despite everything that has been thrown at her. It's utterly heartbreaking to imagine life without her.
The family are in regular contact with medical professionals and it is still to be decided if Phoebe will be able to undergo the surgery. However we wanted to be prepared for costs if everything goes ahead as hoped. The money raised will go directly to Phoebe's parents.
If for any reason Phoebe can't have the surgery we hope to raise money to cover her care costs. If the money raised exceeds the care costs Phoebe's parents want to pass the money on to Funding Neuro the charity raising funds for the clinical trials.
Time is against us and we're desperate for any help to fund the treatment.
After months of despair there is now, however small, the chance to hope. Please help us if you can.
Follow on Twitter @phoebeflofund
My name is Rhys Norris and this is a campaign to raise essential funds for my 5 year old niece Phoebe Read from Swansea in the UK.
Phoebe was diagnosed with a very rare inoperable brain tumour in October 2015. She has undergone radiotherapy to try and reduce the size of the tumour but this has only bought time and temporarily reduced the symptoms.
Her illness is called Diffuse Intrinsic Pontine Glioma and affects less than 40 children a year in the UK. The tumour's location means that it cannot be removed surgically and chemotherapy medication cannot reach it.
Until recently there has been no hope however out of the blue the family have been made aware of a surgeon in Bristol who is developing a new form of treatment specifically for children with Phoebe's condition. This treatment is so new that there have been no clinical trials however some children have already accessed treatment on an individual basis.
The surgery is expected to cost around £40,000 with likely ongoing treatment costs and sadly a funding request has been declined. This means we now have to find ways to raise the money ourselves.
Phoebe is such a beautiful, funny and caring girl and brings joy wherever she goes. She has been incredible throughout despite everything that has been thrown at her. It's utterly heartbreaking to imagine life without her.
The family are in regular contact with medical professionals and it is still to be decided if Phoebe will be able to undergo the surgery. However we wanted to be prepared for costs if everything goes ahead as hoped. The money raised will go directly to Phoebe's parents.
If for any reason Phoebe can't have the surgery we hope to raise money to cover her care costs. If the money raised exceeds the care costs Phoebe's parents want to pass the money on to Funding Neuro the charity raising funds for the clinical trials.
Time is against us and we're desperate for any help to fund the treatment.
After months of despair there is now, however small, the chance to hope. Please help us if you can.
Organizer
Rhys Norris
Organizer
