LiberPress Camins Award 2016

Josele Ferré (Valencia, 1969) is the father of María (Valencia, 1999), a marvellous daughter. Josele, a forest ranger and a delegate of the National Association for the Rett Syndrome in the Valencian Community, was a great sports enthusiast and took part in marathons, cycle races, triathlons, etc. When she was eighteen months old, his daughter María stopped walking and speaking, and lost control of her movements. After two years visiting doctors and taking tests, they learned that María suffered from Rett syndrome, a rare congenital neurological disease that affects one person in 10,000. Josele realised that María smiled and was happy when she went running with him, so he decided to train and compete taking Maria in a push-chair.

Since then, for almost nine years, he has travelled round Spain to compete and, with his daughter, he has won races and raised awareness of rare diseases, which are the “Cinderella” of scientific research.

His story has been made into the film Línea de meta, a documentary written and directed by Paola García Costas, which has won awards at numerous international festivals. His goal in crossing a finish line with his daughter is to publicise her illness, to show that children with rare diseases exist, although pharmaceutical companies do not do research into treatment for them, because it is not profitable. It is more profitable to do research into products for rejuvenation or for reducing cholesterol than a cure that would affect 2,000 girls. But when parents are determined to fight, nothing is impossible.