In March of last year I made an appointment for Darcy at the doctors as her walking wasn't quite right. Throughout May/June she had physio via zoom. We had a face to face meeting with the consultant also in June and were devastated to learn our 7 year old was being tested for a neurological condition.

Nothing had prepared us for the events that followed. By July she was diagnosed with Friedreich's Ataxia and by September she had a diagnosis of a heart condition called Hypertrophic Cardiomyopathy. FA is degenerative and life limiting. Her heart condition is likely to cause heart failure. Our 7 year old had been given a life sentence, in the 6 months that have followed her diagnosis we have had over 30 appointments. She is now under consultants in our local town, at Great Ormond Street and John Radcliffe, Oxford. Since diagnosis she now uses a wheelchair and we have started to make mobility adaptions around our home. Her body naturally doesn't produce energy as it should and she tires easily. In time she will lose further mobility, potentially develop scoliosis, diabetes, her sight, her hearing, the ability to speak clearly could also be affected. The ripple effects of this on our family are horrific. 

This condition occured as both my husband and I are carriers of this abhorrent condition, we had no knowledge of this and will carry this guilt for the rest of our lives. We now know our 6 and 3 year old are also carriers of this condition as we have had them genetically tested. In time we will need tell them so they can make informed decisions in their future if they choose to have their own children. 

My 7 year old doesn't deserve this life sentence and nor does anyone else. I thought I had everything I would ever need in life, now I know I'm desperate for a cure for Ataxia, a condition that until last June I had never even heard of. So for my 40th birthday, with my 3 girls I'm going to walk, run, ride a mile a day for 40 days to raise awareness and funds for Ataxia UK, who are working to develop medications that help slow the effects of this devastating condition. 

Please help me raise awareness and a cure for a condition most people have never even heard of. Thank you. X