Millie has relapsed neuroblastoma. Her best hope for survival is a breakthrough therapy called ‘immunotherapy with antibody’. This is not currently available to Millie in the UK so the family need to spend 6 months in Germany in 2012 so Millie can get this treatment.
When Millie’s neuroblastoma came back, Nick and Coralynne were advised to start fundraising straight away for the £70,000 needed as they were warned that individual Primary Care Trusts (PCTs) rarely agree to fund the costs of children joining the clinical trial in Germany. Nick and Coralynne turned to the Neuroblastoma Children's Cancer Alliance UK for assistance.
At the end of December, Nick and Coralynne received notification from their PCT advising that they will now fund the majority of Millie's treatment in Germany. Nick and Coralynne can't believe that the funding has been approved - to receive such a fast and positive decision is exceptional. Prior to asking for help, the family were advised that funding for this type of treatment would probably not be forthcoming for MIllie, hence the drive towards fund raising.
Although the PCT have agreed to fund the treatment in Germany, it is not clear when the funding will be made available to pay for the treatment. This is crucial as Millie must start her treatment by the end of January 2012, and in the rare cases PCT funding has been made available, it has been known to take months to come through. All the money that has been raised so far will allow Millie to start treatment when she needs it, as the German hospital will require payment in advance. The funds will also be used to cover any medical expenses Millie incurs that will not be paid for by the PCT. Any funds remaining after that will be kept for Millie, should further treatment be necessary in future.
Nick and Coralynne said, “We have been completely overwhelmed by people's generosity and the support from friends, family, colleagues and strangers alike - it is hard to put into words how grateful we are to everyone who has reached out to help Millie. However, we are conscious that our situation has changed since the appeal started and that people may have responded differently under these new circumstances.
We hope that everyone will understand and appreciate why we started fundraising when we did to pay for Millie’s treatment costs - we were continuously told by neuroblastoma doctors and the people around us who had experience of children in this situation that PCT funding would not be forthcoming. As Millie’s parents, our sole motivation has always been to strive to do the right thing for our daughter.
While we are no longer actively fundraising, we realise that some fundraising events are planned for the New Year. We will leave the decision with the event organisers as to whether they go ahead and raise funds to assist Millie, and children like her, to get the help they need to try and become free from this terrible disease.
Once again, we thank you all for your fantastic support.
Millie, Coralynne and Nick x”
