Joss Parkes was born on 22nd June 2000. Dianne and Nigel Parkes had suffered through years of fertility treatments and Joss was their millennium miracle. He was followed by Jamie in 2003 and the Parkes family was happy and complete.
However in March 2005, Joss began to limp slightly and after a few weeks he developed a squint in his left eye. His parents used a medical book to "diagnose" him with a brain tumour. Panicked beyond belief they took him to the doctor and insisted they examine him properly.
An MRI scan picked up Joss' Brain Stem Glioma and the doctor declared it "Disneyland time" and stated nothing more could be done for poor Joss. They gave him twelve weeks to live and told him devastated parents that there was no cure for their boy. The consultant was cold and harsh to this heartbroken family, going into detail about how ill Joss would be come and how he would eventually die.
Joss wasn't offered any treatment, chemo wouldn't work because of where the glioma was and radiotherapy would destroy some of his nerves. Surgery would probably kill him.
Diane and Nigel weren't given any hope but they were determined to help their son. They spent hours looking things up on the Internet and searching for some kind of treatment for Joss. They took it in turns to look after him and eventually they came up with a care plan for him. Despite all the odds, they managed to improve Joss' quality of life and he somehow survived five more years rather then the twelve weeks the doctors predicted.
Joss' health began to rapidly decline in September 2010. He began to find it difficult to walk unaided and ended up having to rely on a wheelchair. The Parkes family had a Christmas holiday in Tenerife and it became aware that Joss was not going to have another miracle.
Joss had a shunt placed in his head in January 2011. Although the operation was a success, he went into respiratory failure later on in the day and died just after midnight on January 25th 2011. He was just ten years old.
Joss has left a huge hole in his family and they have bravely decided to use their grief to help others in their situation. The Parkes family were in a financial position to look after Joss and make sure he could have some fantastic memories. They know not everyone can do the same so they decided to set up a charity in Joss' memory.
Brain tumours are the biggest childhood cancer killer in the UK. Joss Parkes Searchlight aims to help the hundreds of families struggling to cope with a childhood brain tumour every year. They provide practical and co-ordinated support for these families. They offer a helpline, advice on NHS resources, benefits and help you liaise with specialists. They also aim to help you makes your children's wishes come true and create happy memories for your family to cherish.
The charity is fairly new and needs lots of support. Please visit the website and follow them on twitter. If you can donate your time or spare money to them then that would be fantastic. I think this incredibly brave family deserve lots of help and support with this and they have the potential to help so many families in the UK.
Please visit http://www.jossparkessearchlight.org.uk or @josssearchlight for more information
xxx
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