Phoebe Flo Fund
£90,430 of £85k goal
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.
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.
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.
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 email@example.com
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!
So sorry for your loss, such a beautiful little girl. God bless you all.
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
My heartfelt condolences to the family. I cannot begin to imagine the vastness of such a loss. Xxx
I am so sorry, my heart breaks for you all xx
Good night beautiful princess xxxxxxx
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
Deepest sympathy on the loss of your darling girl xxx
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
Sincere condolences, my heart breaks for you. X
My heart goes out to Phoebe Flo's family - such a brave beautiful little girl - heartbreaking xx
Brave girl with the angels. Sleep tight little one xxxxx
So sorry for your loss. We will keep you in our thoughts xxx
Heartbreaking, I am so sorry for the loss of their beautiful daughter. xxx
So glad to hear this - meeting Daisy Duck too !! Praying for you darling xx
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
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
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
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.