I am one of the people keeping ACTIVE in APRIL to raise awareness of the rare neurological condition Sturge Weber Syndrome and to raise vital funds for Sturge Weber UK because this Charity is so important to families of Sturge Weber Sufferers in the UK. When Primrose was diagnosed in October 2018 she was 15 months old, like most families new to this rare diagnosis we were completely lost with no idea what to expect. There is so much to take in with a diagnosis of Sturge Weber Syndrome and it often begins with the sudden onset of epileptic seizures that are difficult to stop which is terrifying. In Primroses case the seizures cause lasting damage to her so keeping them under control and stopping them quickly is vital. Created and run by parents and family members of other Sturge Weber patients, Sturge Weber UK were there for us from the moment we were admitted to hospital with those first frightening symptoms. The practical help and financial support in times of need has been vital to us and we are so grateful. Primrose’s condition has shaped our lives in many ways and Sturge Weber UK have had our back throughout and continue to be the best support we have had the good fortune to access so far in Primroses journey. So I will attempt to walk at least one mile a day throughout April and hope that although times are really tough you might be able to donate whatever you can afford so this amazing charity can continue to offer much needed support to families affected by Sturge Weber Syndrome. To find out more about the condition and the charity visit www.sturgeweberuk.org.uk Sturge Weber UK