My cousin Anna’s amazing daughter Daisy was diagnosed in May last year with Diffuse Intrinsic Pontine Glioma (DIPG), a rare childhood brain tumour for which there is currently no effective treatment. Daisy underwent pioneering treatment at Bristol Royal Hospital for Children, but sadly died in November 2014, the day after her seventh birthday.

In Daisy’s memory, her family and friends are now raising money for much-needed research into DIPG. I’m trying to do my bit to support this, starting with a very exciting Oscars 2015 sweepstake. 

It couldn’t be easier to join in

• just donate £3 (larger donations will of course be super-gratefully received) and leave your name here
  
• email rachelmpilkington@gmail.com to let me know you have donated
  
•  I will email you a list of the Oscar nominees – all you need to do is mark your predictions and email it back to me
• The Oscars take place on Sunday 22 Feb - all predictions must be received by 10pm that day
•  I am providing the prize myself, so all money donated will go to Funding Neuro
• 
  

The prize – the ultimate movie night in

       * A £20 Amazon voucher to spend on the DVD/Blu-ray of your choice (or anything else you want, though hopefully something fun, rather than, say a toaster

      *   A selection of essential movie night supplies including prosecco, fancy hipster popcorn, normal popcorn (in case you don’t like the fancy stuff), and other delicious goodies

    *   The proud knowledge that you are the mistress or master of the cinematic universe. I will brag about this on your behalf on social media if you would like me to, so all your friends know you are the BOSS

If you would like to know more about Daisy’s story, please read on below.

Thank you,

Rachel x

Daisy’s story 

On 3rd of May 2014 the Brooks family received the worst ever possible news, their beautiful and much loved 6 year old daughter Daisy was diagnosed with a devastating and inoperable form of brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma).  DIPG primarily affects children with most succumbing to the disease within 18 months of diagnosis. Daisy went from being a normal child at school one day with no sign of illness to hospital the next and was having radiotherapy by the following week.

At the time, Daisy’s parents were told that there was no hope of a cure but that radiotherapy would buy a little extra time to make precious memories with their daughter and that if they were lucky they could expect a few weeks of ‘good health’ before the symptoms took hold and their little girl would start to slip away. 

Daisy’s family and friends scoured the internet looking for some treatment that could help her.  Like many parents in this desperate situation, they would have done anything, gone anywhere to help their beloved child but they found hope right here in the UK in the brilliant Professor Steven Gill.  Daisy was offered experimental brain surgery at Bristol Children’s Hospital which involved a software guided robot installing a series of catheters attached to a titanium device to deliver chemotherapy direct to the tumour.  Daisy underwent three rounds of treatment and although the initial results looked promising, the tumour proved too aggressive and sadly Daisy died on November 17^th, hours after celebrating her 7^th birthday.

Daisy was such a sweet, brave and caring girl who never complained about anything – she was still smiling on her birthday despite not being able to move, swallow or speak such is the devastating nature of this illness that slowly robs a child of all their vital functions including finally their ability to breathe.  Her family are so proud of her and now want to continue the process to help find a cure so that other children and their families don’t have to go through the same agony.

Daisy’s heartbroken parents are now trying to raise more funds to be used by Professor Gill to continue the research and study that gave Daisy and her family a glimmer of hope.  Through treating Daisy the team proved that it is possible to get the drug in safely, now they need to find the perfect drug.  Daisy’s legacy will continue to benefit children and families in the future given what has up until now been an unequivocal death sentence and so far they have raised over £110,000. They thank you from the bottom of their hearts for any contribution you can make towards this cause.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.