My beautiful daughter Lily-Rose is 3 years old and our story with Rett started early last year. Lily was born healthy and appeared to grow and develop normally until we began to notice after several months that she was a late walker and spoke very few words. We thought at the time by teaching her both French and English language skills might be a reason for her slow speech development. Then, gradually other symptoms appeared like abnormal hand movements, lack of interest in toys, loss of eye contact...etc. We then saw a few doctors and specialists and did a genetic blood test to finally have an answer. My Lily has been diagnosed with Rett Syndrome. We were devastated. However my daughter is a happy girl who loves laughing and giggling like in the picture. I am hoping one day I will be able to hear her voice and to hear her saying: "Hello daddy, I love you ".

Rett Syndrome is a severe, life long neurological disorder that affects 1 in 12,000 girls. It affects every aspect of their lives; losing away their ability to talk, walk and use of their hands...but there is hope.

I am running the London Marathon in April 2015 to raise money for Rett UK, who provide professional support and lead the race to find effective treatments and a cure for our children living with Rett Syndrome.

Thank You for helping this important cause.