Phoebe Flo Fund

£90,430 of £85k goal

Raised by 1,099 people in 14 months
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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.
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Update 5
Posted by Rhys Norris
5 months ago
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Thank you everyone for you kind words and messages.

Here is the link to the announcement in the Evening Post http://www.family-announcements.co.uk/southwales/view/4224893/read

The nominated charity is Funding Neuro and if you would like to make a donation please visit http://fundingneuro.com/donate/

Cati and Paul have asked if as many people as possible can sign and share this petition for DIPG funding to be discussed in Parliament https://petition.parliament.uk/petitions/131556 This could make an enormous difference in the battle against DIPG. The petition closes on 3rd December so time is against us.

Thank you
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Update 4
Posted by Rhys Norris
5 months ago
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With the heaviest of hearts we announce Phoebe Flo has passed away. Despite her illness, she remained active and engaged right to the end and was surrounded by her family throughout. Her parents and wider family want to thank you all for your support during her illness. Details of the funeral arrangements will be announced in due course. Can we ask that the family are given the space to grieve during this most difficult time? Feel free to share your messages of condolences here or on the Facebook group and we'll pass them on to the family. Goodnight Phoebe Flo x
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Update 3
Posted by Rhys Norris
9 months ago
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1
1
It's been another 2 months and they’ve just flown by and apologies for not updating sooner. So much has happened since the last post and I'm pleased to say things have started moving. Phoebe has been to Cologne twice. First off to meet with the Professor Van Gool who has developed the pioneering immunotherapy treatment and also to gather samples so that they could begin preparing the treatment. Phoebe returned a week later accompanied by Mum, Dad and Gu and Pops ready to help her through whatever was ahead. She underwent an intensive course of treatment for a what turned out to be a very long and challenging two and half weeks. The treatment and its effects are pretty unpleasant and it’s hard going for adult patients let alone a 5 year old girl. Phoebe is so young and prior to the treatment her condition was beginning to deteriorate so it was especially difficult for her and everyone with her. Despite all the challenges faced she battled through and made a safe return to Swansea in mid May. She was so pleased to be home in familiar surroundings and all her toys and creature comforts within touching distance. The nature of the treatment meant that side effects would continue for some time after returning however you will all be pleased to know that Phoebe is doing ok. However it’s still early days with a long way still to go. I have seen her a couple of times and although clearly affected she is keeping stimulated with her crafting projects. It was great to hang out with her and having little sing song and cracking some jokes. All this has been far from easy and it's clearly taken its toll physically and emotionally on Phoebe and her parents, however she remains as tough as ever and is preparing for the next phase of treatment.

She was so brave in Germany and has been working so hard with the physios back in Swansea that she deserved a reward. Cati and Paul took Phoebe on a short break to a certain mouse’s Parisian home! She had a lovely time going about the Magical Kingdom getting to meet all the characters, however Phoebe only had one requirement whilst there and that was to meet Daisy Duck. They searched high and low for Daisy but couldn’t find her anywhere, but on their last day at the park Phoebe was taken to hotel’s premiere suite where she met none other that Daisy Duck herself with Donald in tow! Phoebe had the VIP treatment as she got to hang out with the two of them all to herself. She was made up and it topped off the holiday beautifully. Phoebe summed up just how great a time she had when she declared it “the best holiday EVER!”

Phoebe and the family came back at the start of June, invigored by the time away and ready to carry on. Since her return, Phoebe has been in great demand especially for her tea parties, picnics and her growing glitter tattoo enterprise! She’s caught up with family and friends slotted into her busy schedule.

Phoebe will be back and forth to Noah’s Ark in Cardiff in preparation for the next phase of treatment. Phoebe has been so brave throughout what is a terrifying and confusing time and she deserves every little spark of joy that she can get. Words cannot describe how amazing this little girl is, facing every ugly and cruel part of this horrible disease with steadfast courage. What your donations have done is give her a fighting chance and trust me fighting is exactly what she’s doing. Phoebe's battle continues and we will be there every step of the way. Thank you to every single one of you who has given to Phoebe's cause and making a difference to this beautiful little girl.

Lastly it is with the greatest thanks we can say we have hit our target! This achievement is great indeed and we could not have done it without everyone's support and help. You have all been magnificent!

Now that we have reached our target we feel that we should not stop here. It's been a very difficult journey where we haven't known from one day to the next where to turn so we hope that once all Phoebe's care has been accounted for we will love to take all the good will and support received and use it to help and guide others in similar circumstances in the future.
Phoebe having the princess pamper
Phoebe meeting her favourite characters
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Update 2
Posted by Rhys Norris
13 months ago
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Following last night's post on the Phoebe Flo Fund's amazing progress so far, it's only right to update you on how things have been going with Phoebe. The family have been flat out visiting doctors at the hospital, taking Phoebe for scans and check ups, attending meetings all to keep pushing forward Phoebe's case for life extending treatment with every hope that it was edging nearer.


Last week her medical team discovered that Phoebe Flo has an unexpected complication in her condition; it is preventing her being able to access the Bristol CED programme at present. The Noah’s Ark team are currently reviewing how to overcome the current difficulty and have set about identifying what options may be viable and accessible, a search that has been extended to Great Ormond Street Hospital in London and Cologne in Germany.


In order to treat the brain tumour she first has to overcome this complication and the experts in Germany can help pave the way back to Bristol. The CED programme in Bristol would cost £45,000 (correction on initial amount) plus travel and care. To get there we believe the treatment in Germany will be in the region of £40,000 and Phoebe is visiting the clinic in Cologne next week.


Despite the symptoms of her illness beginning to reveal themselves and all the latest upheaval, Phoebe has taken it all with grace and dignity whilst managing to keep everyone entertained with her cunning sense of humour and her dazzling spirit. Nevertheless now that her condition has started to deteriorate her parents and the rest of the family are all left feeling completely helpless.


Thanks to the amazing generosity of everyone Phoebe was so close to getting to Bristol but as with conditions like Phoebe's, there is always a risk of complication. This unforeseen setback means that she now needs your help more than ever as we try and reach a new target of £85,000.


We are doing everything we can to find the money to pay for this treatment and we take so much confidence from the amazing achievements of everyone so far. We have every hope that all your amazing work can continue and the new target can be reached.


These latest events have been a devastating shock to the family and have meant we now have to take an unwanted detour in order to reach our original destination. With Phoebe's condition deteriorating and her having gone through so much already, the last thing the family wanted was to put her through any unnecessary upheaval but they have no other choice. Everything that has happened has made an already incredibly difficult situation even more challenging. However, the love and support expressed by you all has brought great comfort and strength to keep fighting to get Phoebe the treatment she so desperately needs.


The family require as much privacy as possible as they face this new hurdle so can I ask, if you have any messages or questions, please contact me and the team on phoebeflofund@gmail.com
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Read a Previous Update
Jana Orengia Elliott
14 months ago
3
3

Prayers for this sweet girl! My son was also diagnosed with an inoperable brain tumor. I know that there are many variables in cases but I have to say that Dr Rick Boop at LeBonheur Childrens in Memphis, TN was a Godsend! He operated on the tumor and removed most of it. I know you aren't in the US but if you are looking for more options, I highly suggest him and his team. They treat children from all over the world. Ill be keeping Phoebe in my prayers!

+ Read More
June Phillips
5 months ago

So sorry for your loss, such a beautiful little girl. God bless you all.

+ Read More
Debbie Tamplin
5 months ago

Heartbreaking news, what a brave little princess. Safe in the arms of the angels now. Thoughts are with you all at this horribly difficult time. RIP Phoebe Flo xxx

+ Read More
Ross Williams
5 months ago

R.I.P :(

+ Read More
Anita Hughes
5 months ago

My heartfelt condolences to the family. I cannot begin to imagine the vastness of such a loss. Xxx

+ Read More
Kate Clay
5 months ago

I am so sorry, my heart breaks for you all xx

+ Read More
Nicky Williams
5 months ago

Good night beautiful princess xxxxxxx

+ Read More
Norma Sabat
5 months ago

I am so very sorry for the sad news. Phoebe was definitely a very courageous girl. My prayers are with you and her family, that God may give them comfort and peace. I cannot imagine the pain they are going through, to lose a child must be the most painful thing eve. May the good memories be always with them and the rest of the family. Phoebe was a very beautiful and special child. With love, Norma Linden

+ Read More
Linda Pullen
5 months ago

Deepest sympathy on the loss of your darling girl xxx

+ Read More
Lisa Bray
5 months ago

My love and thoughts are with u I sadly lost our little boy 4months ago he only lived 2hrs i find it hard to cope but couldn't imagine growing a bingo with such a beautiful princess being so strong .. n putting up a huge fight my love is with u all xx

+ Read More
Gillian Jackson
5 months ago

Sincere condolences, my heart breaks for you. X

+ Read More
Debbie Gardner
5 months ago

My heart goes out to Phoebe Flo's family - such a brave beautiful little girl - heartbreaking xx

+ Read More
Emma Pask
5 months ago

Brave girl with the angels. Sleep tight little one xxxxx

+ Read More
Emma Ezra
5 months ago

So sorry for your loss. We will keep you in our thoughts xxx

+ Read More
Claire Phillips-Stanford
5 months ago

Heartbreaking, I am so sorry for the loss of their beautiful daughter. xxx

+ Read More
Gail Googe
9 months ago

So glad to hear this - meeting Daisy Duck too !! Praying for you darling xx

+ Read More
Deb Davies
9 months ago

I am so glad to hear that amongst all the difficulties she is facing she still has time for a little Disney magic, "the best holiday ever" Little princess deserves all the fun in the world. I liked the ducks too xxx

+ Read More
Norma Sabat
9 months ago

This has brought tears to my eyes, thank you for the wonderful update on Phoebe. I keep her and family in my prayers and I always ask Diane how she's doing. You are doing an amazing job, may God continue blessing you! Norma

+ Read More
Hayley John
13 months ago

Hello. I am writing on behalf of colleagues of Geri's husband Ian. We are going to be holding a raffle and bake sale next Friday for Phoebe and will donate all proceeds to the fund. Our hearts go out to all the family Xx

+ Read More
Dawn Withers
14 months ago

Hello to Sam Bridges. Thank you ever so much for your donation. Just to answer your question - unfortunately proton therapy won't help Phoebe as the effects are similar to radiotherapy, yet radiotherapy has proved to be best for this sort of tumour. All advice and thoughts are totally appreciated though Sam. Thank you for that too. Best wishes.

+ Read More

£90,430 of £85k goal

Raised by 1,099 people in 14 months
No Longer Accepting Donations
 Share on Facebook
Created February 24, 2016
ES
£40
Elaine Summers
5 months ago
MA
£70
Matt Ashbrook
6 months ago
£62
Kirsteen Reed
7 months ago
JC
£10
Johanne Collins
8 months ago
DW
£350
Dean Williams
8 months ago (Offline Donation)

Massive thanks to Dean for raising an awesome amount for Phoebe by running Swansea Half Marathon. Brilliant!

CG
£307
Claire Gourley
8 months ago (Offline Donation)

Huge thanks to Claire for running the Swansea Half Marathon and raising £307!

YH
£1,144
Yvonne Seage, Rachel Webb & Clare Hawkins
8 months ago (Offline Donation)
1
1

Huge thank you to the three parachutists from New Directions! Over £2000 raised in total with donations coming from linked events!

RD
£60
Richard Davies
8 months ago
SM
£10
sam martin
8 months ago
MS
£200
Mola Singh
9 months ago
Jana Orengia Elliott
14 months ago
3
3

Prayers for this sweet girl! My son was also diagnosed with an inoperable brain tumor. I know that there are many variables in cases but I have to say that Dr Rick Boop at LeBonheur Childrens in Memphis, TN was a Godsend! He operated on the tumor and removed most of it. I know you aren't in the US but if you are looking for more options, I highly suggest him and his team. They treat children from all over the world. Ill be keeping Phoebe in my prayers!

+ Read More
June Phillips
5 months ago

So sorry for your loss, such a beautiful little girl. God bless you all.

+ Read More
Debbie Tamplin
5 months ago

Heartbreaking news, what a brave little princess. Safe in the arms of the angels now. Thoughts are with you all at this horribly difficult time. RIP Phoebe Flo xxx

+ Read More
Ross Williams
5 months ago

R.I.P :(

+ Read More
Anita Hughes
5 months ago

My heartfelt condolences to the family. I cannot begin to imagine the vastness of such a loss. Xxx

+ Read More
Kate Clay
5 months ago

I am so sorry, my heart breaks for you all xx

+ Read More
Nicky Williams
5 months ago

Good night beautiful princess xxxxxxx

+ Read More
Norma Sabat
5 months ago

I am so very sorry for the sad news. Phoebe was definitely a very courageous girl. My prayers are with you and her family, that God may give them comfort and peace. I cannot imagine the pain they are going through, to lose a child must be the most painful thing eve. May the good memories be always with them and the rest of the family. Phoebe was a very beautiful and special child. With love, Norma Linden

+ Read More
Linda Pullen
5 months ago

Deepest sympathy on the loss of your darling girl xxx

+ Read More
Lisa Bray
5 months ago

My love and thoughts are with u I sadly lost our little boy 4months ago he only lived 2hrs i find it hard to cope but couldn't imagine growing a bingo with such a beautiful princess being so strong .. n putting up a huge fight my love is with u all xx

+ Read More
Gillian Jackson
5 months ago

Sincere condolences, my heart breaks for you. X

+ Read More
Debbie Gardner
5 months ago

My heart goes out to Phoebe Flo's family - such a brave beautiful little girl - heartbreaking xx

+ Read More
Emma Pask
5 months ago

Brave girl with the angels. Sleep tight little one xxxxx

+ Read More
Emma Ezra
5 months ago

So sorry for your loss. We will keep you in our thoughts xxx

+ Read More
Claire Phillips-Stanford
5 months ago

Heartbreaking, I am so sorry for the loss of their beautiful daughter. xxx

+ Read More
Gail Googe
9 months ago

So glad to hear this - meeting Daisy Duck too !! Praying for you darling xx

+ Read More
Deb Davies
9 months ago

I am so glad to hear that amongst all the difficulties she is facing she still has time for a little Disney magic, "the best holiday ever" Little princess deserves all the fun in the world. I liked the ducks too xxx

+ Read More
Norma Sabat
9 months ago

This has brought tears to my eyes, thank you for the wonderful update on Phoebe. I keep her and family in my prayers and I always ask Diane how she's doing. You are doing an amazing job, may God continue blessing you! Norma

+ Read More
Hayley John
13 months ago

Hello. I am writing on behalf of colleagues of Geri's husband Ian. We are going to be holding a raffle and bake sale next Friday for Phoebe and will donate all proceeds to the fund. Our hearts go out to all the family Xx

+ Read More
Dawn Withers
14 months ago

Hello to Sam Bridges. Thank you ever so much for your donation. Just to answer your question - unfortunately proton therapy won't help Phoebe as the effects are similar to radiotherapy, yet radiotherapy has proved to be best for this sort of tumour. All advice and thoughts are totally appreciated though Sam. Thank you for that too. Best wishes.

+ Read More
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