News

Billie recently had her regular three monthly brain scan. See her Diary for more information.

They have done it! Billie’s teachers at St Leonard’s School, Exeter, have completed the 3 Peaks challenge. Inspired by Billie they did the challenge to raise funds for research into child brain tumours. They climbed Ben Nevis, Scafell Pike in the Lake District and Snowdon in 27.5 hours. An amazing achievement.

Billie’s teacher, Leanne Evans, writes: “We Left Exeter at 4am and started climbing Ben Nevis at 14:30. We finished Ben Nevis, and then drove through the night to the Lakes. We climbed Scafell Pike in the dark and then headed off for Snowdon about 9am in the morning. We finally finished at 6pm on the Monday
which made the whole event 27.5 hours.

Needless to say we were exhausted! None of the teaching staff are walkers although we were lucky enough to be led by a Royal Marine who did all the driving and walking without any sleep at all. We were able to doze in the minibus but they’re not the most comfortable to sleep in!

Ben Nevis was by far the hardest, especially as it was a complete white-out at the top. A couple of us fell over in the snow despite having walking poles. There were times when it was a real mental challenge. Our legs were hurting but you just plod on and hope for the best! Luckily we escaped with just a few blisters and stiff muscles, a small price to pay.

We think we will have raised about £2,500 for research into child brain tumours. We felt a tremendous sense of achievement and we thought of Billie throughout. She is the strongest and most inspirational little girl I have ever met and I adore her. Having her as part of my class really is an honour.”

To see a video they made about their challenge click on Billie Butterfly 3 Peaks.

Today we have opened a new Just Giving page to raise much needed funds for child brain tumour research through Brain Tumour UK. Brain tumours are the biggest cancer killer of children in the UK. Help us to beat this disease by giving whatever you can afford. Just click on the Just Giving button.

Research into this most dreadful of all cancers is seriously underfunded. In 2007-08, for example the Medical Research Council invested less than £1 million in brain tumour research compared to £14 million in leukaemia research.  Yet brain tumours claim the lives of more children, and young men and women than leukaemia.

Join us in raising funds for research into child brain cancer so that survival rates are improved and children with brain tumours have a greater chance of growing up like their friends.

Billie is eating normally again after 6 months on liquid feed via a tube through her nose. A big psychological boost but we are not getting carried away. See Billie’s diary for full story.

Billie’s teachers at St Leonard’s School Exeter, inspired by her bravery, are taking part in a huge charity challenge to raise money for brain tumour research. Although none of them are expert climbers they are attempting to climb the three highest mountains in Scotland, England and Wales in 24 hours.

They start at the foot of Ben Nevis on 1 April this year. After climbing this 1,344 metre peak they drive to Scafell Pike (978 metres) in the Lake District and then on to Snowdon (1085 metres) in Wales. By the end of their challenge they will have climbed a total of 3,407 metres. Six teachers from Billie’s school and one Royal Marine are taking part.

Billie’s teacher Leanne Evans said they had been inspired by Billie’s determination, “Every day she comes into class and joins in with everyone else. Billie never complains and is an asset to our class”. Teaching assistant Dawn Wills who supports Billie added,”if a child can put up with what Billie has been through then I can put up with a few blisters.”

Please help the St Leonards “Peak Performers” to raise vital money for brain tumour research and tell your family and friends. You can donate on line at http://uk.virginmoneygiving.com/SLPS

Billie is doing OK all things considered. For the latest news about how she is getting on see Billie’s Diary.

2011 was a very difficult year for Billie and her family. First mum Terri’s breast cancer in the Spring followed by surgery, chemotherapy and radiotherapy. Then in the middle of the chemotherapy, Billie was diagnosed with brain stem cancer of the worst kind. Autumn was an extraordinary time with amazing support from so many people. So far 2012 has started well with Billie back at school and coping with her treatment. Lets hope for continued progress and that this will be a good year.

On Tuesday 10 January international artist Clive Betts is performing at 3.30 pm at St Leonard’s Church, Exeter. All proceeds will go to the Paediatric Oncology Unit at Royal Devon and Exeter Hospital who have been brilliant with Billie. Admission is free but donations are welcome. Clive Betts gave his first guitar recital at the age of 15 and was then selected to perform in the Julian Bream BBC Master Class series. He was lead guitar in Jesus Christ Superstar and now enjoys an international career with concert, festival and radio performances throughout Europe, The Middle East and North America. He was invited to give a musical soirée for Salvador and Gala Dali at their Spanish villa, and performed in the Queen’s Jubilee celebrations in London, The British Embassy in Helsinki and for the Royal Family of Kuwait.

After an amazing four months we now know that the main target of £200,000 has been reached. Thank you everyone. We have been overwhelmed by the kindness and generosity of people all over the world who have been touched by Billie’s story.

Although this target has been reached we still welcome donations. We don’t know the eventual cost of Billie’s treatment and Billie’s Trust clearly states that any money not needed for her treatment will be used to fund research into child brain cancer in the UK.  We are really pleased that the campaign has helped to raise public awareness of the horror of child brain cancer – so often a terminal condition and so underfunded. We want to continue the job of raising awareness so that in the future there may be more help for children like Billie to survive this terrible disease.

The fundraising team and Billie’s family are aware of sceptical views about treatment at the Burzynski Clinic in Texas being expressed on the internet and feel it is important to make a brief statement. 

Right from the start we have been well aware of the widely differing views about this treatment. Pioneering  treatment inevitably attracts controversial views. The family spent a great deal of time exploring the options available when it became clear that no further conventional treatment for Billie was available in the UK. The costs are high but no more so than other medical treatment in America. 

We know there are no guarantees with any experimental treatment but were not prepared to sit back and do nothing while there was a small chance this treatment could improve her chances of survival. The family has been in contact with other families whose children have been helped by this treatment. The clinic is currently conducting clinical trials approved by the FDA, the Government agency responsible for approving all medical treatments in the USA.

 We are tremendously grateful for the overwhelming support we have received. Soon after Billie was diagnosed a Trust Fund was set up in her name. One of the stipulations of the Trust is that any funds not required for her treatment will be spent on research into the treatment of child brain cancer in the UK in the hope that there may be better help for children like Billie in the future.