Thanks for taking the time to visit my JustGiving page.

In June this year, my beautiful nephew Téo was diagnosed with the rare condition Sagittal Craniosynostosis. This meant that the plates in his head had fused too early, restricting its ability to grow in the normal way, putting him at risk of a number of serious complications and requiring some rather terrifying surgery to try to fix.

Over the past few weeks, mum and dad have struggled to come to terms with the news and tried to find ways to find out more about what to expect in the coming months and years, as well as trying to find positive stories to help. The team at John Radcliffe hospital were fantastic, as were a small but amazing charity Headlines . They have already supported them in trying to understand such a little known condition, giving Anthony and Marianne info about what lies ahead, and even how to explain what will happen to Téo to his big brother Tom.

With all this happening, we wanted to do something to help. To stop feeling so helpless and to help give back what was being given to us. So, after spending a lot of time walking with Téo to get him to nap, Marianne suggested to my brother Anthony, that we do a walk to raise money and awareness. It started as a joke but, a few 10k walks later it turned into a 100k, 24 hour walk along the River Thames from Putney to Henley. And what's more-  he wouldn’t be alone! Cobbling together a band of misfits and vagabonds who had spent more time walking to the bar than anything else in recent years, we now have a full team all willing to take on this '100k Ultra Challenge'  in September to raise as much money as we can for a charity that is- very suddenly- so close to our hearts. 

Your support would be so so gratefully received- charities such as Headlines  are small and receive little to no funding due to the condition being so unknown and rare. The work they do is vital to those affected though- people like us, whose whole world has been turned upside down by this condition. 

So please, donate if you can, share if you can't- both will do a huge amount to help us achieve our goals of raising money and awareness- and help give our little boy the support he may now need for the rest of his life.

Thank you x

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