eMy daughter, Ellie, was born in 2004. She was the most delightful baby and so easy, not at all what i had been told to expect from a newborn. But at 9 months old she started to show signs something wasn‘t right. She wasn‘t even close to hitting any physical milestones. We, her parents, raised our concerns and when she was 1 she was referred to a physio. The physio examined her and we were referred to a paediatric neurologist. At 18months old Ellie had her first MRI. It showed an abnormal development of the cerebellum, my darling girl was destined to have severe mobility issues. As time went on she had more and more tests and procedures conducted on her but we weren’t getting any answers. She had been diagnosed with Cerebullar Ataxia with Atrophy. Not only was her brain not formed properly but it was deteriorating, shrinking. But when I researched this it just didn‘t seem quite right. Something wasn’t adding up. Then when she was 11/12yrs old the genetics dept finally had a breakthrough - we had a confirmed diagnosis, KAND (KIF1A Associated Neurological Disorder). We were told very little about this as its extremely rare. Ellie is one of 10 known sufferers in the UK. I was very fortunate to have found a charity group in USA for this condition, set up by other parents who were as frustrated by the lack of knowledge and information as I was and still am. The charity is working very closely with the only known doctor in the world that is actively researching the condition in an attempt to find treatments and eventually a cure! The dr is hosting a 2 day conference in August and in collaboration with the charity is attempting to get all known sufferers across the world to New York for examination, consultation and sharing of information. As she is getting older it is becoming more and more apparent that she will most likely end up in a wheelchair permanently. We are doing all we can to prevent this but there is so little information that in reality no one can tell me what will happen or what to expect which is terrifying. She will never have a ‘normal’ future as she will always need full time care

This trip is expensive and we are going to be fundraising for help towards costs for the flights. Ellie and I, her mother, will be taking part in the 5km Gatwick Run and I will also be competing in a 10km Mud Monsters obstacle run. Anything we can raise for completing these would be used for the flights to get Ellie in front of this dr with our everlasting hope a cure can be found.