Our story begins on April 13th, 2011 the day our whole existance was turned upside down. Abbie our darling 6 year old daughter had been unwell in that she was a little lacking in energy and seemed to have trouble controlling her eyes...our feeling was that perhaps she was diabetic and needed an opticians appointment, how wrong could we have been?...
A visit to our local doctor lead to an urgent appointment with a consultant paediatrician at our local hospital, who revealed that they suspected and were investigating the presence of a brain tumour. A later MRI scan showed a mass in her brainstem and their suspicions were confirmed.
Abbie was diagnosed with a rare, incurable and inoperable Diffuse Intrinsic Pontine Glioma (DIPG) , the only standard treatment for which is palliative radiotherapy. Over the course of the next two months Abbie endured and battled through her treatment at The Royal Marsden Hospital in Sutton,Surrey where the care that she received was exceptional.
Abbie recovered enough to enjoy one last holiday, we took a cottage in Dorset which we had taken with her religiously every summer...we loved it there so much! only this time grandparents and aunties and uncles came to. She got a little tired at times but for us it had a whole totally different relevance to those previous visits but Abbie had fun, the weather was great and there was plenty of wave jumping and swimming going on!
To be delivered the death sentence that is DIPG for your child is surely the cruellest and most harrowing experience that any parent should have to face. At times the emotional strain was completely overwhelming and yet we paint on a smile as if all is normal for our amazing children. Abbie only ever believed that she would be well again and all she would speak of the whole time would be getting back to school with her friends where she belonged.
DIPG affects upto 40 children per year in the UK with an age range of between 5-10 years. It is extremely agressive with a median survival rate of between 9-12 months. We had exactly 5 months to the day from Abbie's original diagnosis, we managed to get her home from our local hospital for one last night of cuddles in familiar surroundings with her family around her and sadly she slipped away in our arms the following morning on Sept 13th 2011.
In November 2012 'Abbie's Army' gained their own charity registration with the Charity Commission , during 2011 we had already donated an amazing £81,000! the majority of this going to the Childrens Brain Tumour Research Centre at the University of Nottingham .We also supported the Royal Marsden Cancer Charity through their Marsden March event. We are now also funding the vital DIPG research taking place at the Institute of cancer Research in Sutton and the DIPG Collaborative with awards in 2013 of £125,500 that will hopefully bring forth much needed advancements in the treatment of this universally fatal tumour , and other paediatric brain cancers.
Abbie was our whole world, no parent ever wants to hear that there is no cure and no hope and they should never have to.....
Abbie's Mummy & Daddy. Forever 6 in our hearts. XXX
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Abbie's Army - Fight Kids Brain Cancer - © 2012: Charity Reg: 1149400