Our daughter Evie has an incredibly rare progressive neurological disorder-Labrune syndrome. (Leukoencephalopathy with calcification and cysts) She also has dystonia which affects all of her limbs. When she started school she could walk, talk, read, count, write her name. She is now 8 and a full time wheelchair user. She can no longer read or write and finds it increasingly difficult to speak. She is also fed via a tube as chewing and swallowing are tricky. Evie's condition is life limiting-we don't know how long we have her for. Evie loves life and wants to live it to the full. We are lucky enough to be able to hire an adapted bike to take her for a ride around the park which she loves. We want to be able to do this for her whenever and wherever she wants and would love to be able to buy her own bike. One where a chair is attached to the front so that we can ride somewhere and then go and do something together as a family. These bikes are ridiculously expensive and we simply cannot afford to buy one. Evie is a thrill seeker and everything is 'faster', 'higher' 'again'!!!! Having a bike like this would mean that we can put that smile on her face more often. Her sister can go on a family bike ride like all her friends and we can simply enjoy family time.