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Research project is Billie's legacy

By Exeter Express and Echo  |  Posted: January 10, 2013

By Tom Bevan

Billie Bainbridge with her parents Terri and Sam

Billie Bainbridge with her parents Terri and Sam

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THE legacy of a young girl who touched the hearts of people across the city during her brave battle with cancer will be a three-year research project into childhood brain tumours.

Billie Bainbridge was just five when she died in June last year from a rare form of brain cancer known as diffuse intrinsic pontine glioma.

During her fight with the disease the Billie Butterfly Fund was set up to raise money for her to receive treatment at an American clinic after medical staff in the UK told the family there was nothing more they could do.

Thanks to the public's generosity £396,000 was raised in just a few months – almost double the original target.

And with less than a quarter of that spent on Billie's treatment, the family are now fulfilling their pledge that the remainder goes towards research.

Billie's parents Terri and Sam, who live in St Leonards, have announced the money will fund a three-year project at Nottingham University's Children's Brain Tumour Research Centre.

A grant of £267,000 has been approved and transferred, with a small balance in reserve for any additional costs which emerge from the research.

There is also a chance this could be match-funded by Nottingham University.

The study will be led by Professor Richard Grundy, who has an international reputation for his research on paediatric brain tumours.

Sam said: "This is never what we wanted – we wanted our daughter – but it still means a huge amount to us as a family.

"We are in awe at how much was raised. We were so taken up with Billie and looking after her that Terri and I did not get too heavily involved with the fund.

"That was all down to friends and family, and it was an incredible amount in such a short space of time. If it does get match-funded it will be more than half a million pounds.

"We had no idea the fund would do so well. To be able to set up a specific research project in Billie's name is truly amazing.

"Terri and I went up to Nottingham to see Richard Grundy and look around the labs. Brain tumour research is so under-funded it is ridiculous. People don't talk about it much, but funding really needs to be found.

"This project will look specifically at DIPG because that was Billie's tumour, but it is all a matter of building blocks. What they find out will benefit all forms of it. It is about building a way to find the answers.

"It is about getting closer to finding a cure and discovering treatments which can help. At the moment there isn't any treatment for what Billie had. There is radiotherapy, which will only buy time. That is all it will do."

Sam said they had been over-whelmed with the support from family, friends and those who took Billie to their hearts during the fundraising.

He added: "We just have to learn to deal with what happened. It never gets any better and will never go away. You just get more used to dealing with it. Our other child Joe, who is now three, helps us so much – I don't know where we would be without him.

"I just want to say a huge thank you from us to everyone who did anything with the fund. We are now just keeping everything crossed that the study can produce some good results."

The study is said to be ready to start "imminently" and Sam said they will be kept fully informed of its progress.

It is being set up after detailed discussion with Brain Tumour UK and the Children's Brain Tumour Research Centre.

Billie's grandfather Pete Bainbridge added: "This is not the result we wanted, but the hope now is this could mean other little children have more of a chance to survive than Billie had. We just hope they can start to find some answers.

"So many people in Exeter did so much and gave so generously that we wanted to say exactly how the money was being spent."

During Billie's illness her mother Terri was facing her own battle with breast cancer.

Billie's grandfather Pete Bainbridge said Terri was now "doing well".

The fund is now closed but donations can still be made for Brain Tumour UK via a link on the website www.billiebutterfly fund.org

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