On 27 & 28 July 2017, our group of novice hikers will attempt to climb the three highest peaks in the UK - Ben Nevis (1345m), Scafell Pike (978m) & Snowdon (1085m) - all in under 24 hours. 

We are raising money and awareness for Sturge-Weber UK, a critically important and small, but very underfunded charity that supports children and families affected by Sturge-Weber Syndrome, a rare neurological disorder affecting the skin, eyes and brain that is often identified due to a large port-wine stain on the face. 

In January 2017, my son Sam was diagnosed with SWS Type III aged just 9 months old. This form of the condition is so rare that some medical studies cite just 28 other reported cases worldwide. It is more difficult to diagnose due to the lack of the facial birthmark. Sam's condition caused him to suffer with aggressive seizures. He deteriorated rapidly over the next couple of months, enduring over 100 seizures every day. Doctors were unable to control these with medication, resulting in Sam being fast-tracked into theatre at Great Ormond Street for major brain surgery - a hemispherotomy - where the right side of his brain was completely disconnected from the left.

Sturge-Weber UK have been a phenomenal resource for us as a family.   Set up and run entirely by parents and families of children with SWS, they have been incredible in terms of emotional support, knowledge, research and reassurance. The work they have done promoting awareness and research into this condition has enabled scientists to isolate the gene that causes this illness, but they have not yet been able to develop a cure. By continuing to raise awareness we hope that one day they will find a cure so that others do not have to suffer.

Your support is hugely appreciated. Thank you.