National brain tumour research funding needs to increase to £30-35 million a year
A warm welcome to another new Member Charity
Blue Skye Thinking has been collaborating with us for a number of years to lobby the government to invest more into research so that new treatments for brain tumour patients are discovered in the UK. So, it’s lovely to welcome Blue Skye Thinking into the Brain Tumour Research family as a new Member Charity.
Blue Skye Thinking was set up by the family of Skye Hall, who was diagnosed, aged four, with a grade 4 medulloblastoma in 2013 after numerous visits to the GP. His symptoms of nausea and vomiting in the morning were identified as acid reflux. With the failure of medication to combat his condition, Skye’s parents insisted on a referral to a paediatrician.
Skye was given an MRI scan which revealed the brain tumour and admitted to hospital the very same day. Despite surgery, and a tough treatment regime of chemotherapy and radiotherapy known as the Milan Protocol (now withdrawn from use in the UK because of its toxic side-effects), Skye developed paraplegia with double incontinence and very poor use of his upper limbs and hands. The family didn’t know if he would improve, remain stable or deteriorate. Tragically, Skye passed away at home 12 months after diagnosis from neuro-toxicity.
Blue Skye Thinking supports research into the treatment of childhood brain tumours, striving to give all children diagnosed a better chance of survival and improved quality of life during and post treatment. Run by volunteers, funds donated go directly to the forefront of research and wellbeing projects.
The family also actively campaigns for ‘real-time’ data collection for standard treatment protocols to stop preventable deaths.
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