<p>My 5 year old daughter Tilly Sharkey was diagnosed with a very rare brain tumour DIPG, with 0% survival rate, her giving prognosis was an average of 1 year and the only option was radiotherapy which would only prolong Tillys life by a few months. Like any parent, I couldn't accept this and we researched non stop and decided to opt out radiotherapy and take Tilly to America for a clinical trial Antineoplastons. which is a 20-30% survival rate. Only 4 weeks on the treatment and Tilly was showing signs of improvement. She also took gene targeted therapy and avastin enhancing Tillys survival rate to 60-70%. Her scan has showed us that the tumour is dying inside & is starting to break away. This is still very early days for us but it was the only option that gave her some sort of chance and gave us some hope. We are now back in the uk and are struggling massively for medical professional to help administer the medication Tilly needs called avastin, also known as Beacizumab. Currently the uk have not authorised for avastin to be used to treat brain tumours. There is no evidence to say it improves survival for DIPG. Although it is effective in treating other forms of cancer. It is, however being used in some clinical trials for high grade gliomas in both adults and children. Avastin is a type of monoclonal antibody. Researchers have learned how to make antibodies that detect specific substances, known as 'markers' on the surface of some brain tumour cells. It works by attaching itself to markers on the tumour cells surface and blocking signals that help the cells to grow or divide. This is a drug that could help prolong Tillys life by years instead of months. We have been traveling to Germany for this treatment which means Tilly coming off all her medication so she can fly which then makes her very poorly. Please please help us try and get this approved to help save Tillys life. Like any mother I will keep on fighting for her and hope and pray that someone out there is willing to help her. </p>
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