A father will run next Saturday with his daughter, who suffers from Rett syndrome, the Ironman Lanzarote 2011, with the aim of raising awareness about this highly disabling degenerative disease that, today, has no cure.
José Carlos Ferré has been participating for three years with his daughter María in sports competitions throughout Spain and raises funds to promote research on Rett syndrome. José Carlos allocates these funds, through the San Juan de Dios Social Work, to the only Rett syndrome research project that exists in Spain and that is carried out at the Sant Joan de Déu maternal and child hospital.
María suffers from Rett syndrome, a degenerative neurological disease that affects one in 10,000 girls and that manifests itself in the first years of life when the baby begins to progressively lose all the skills she had acquired during the first months of life.
José Carlos Ferré, who has always been fond of sports, decided to involve his daughter in the races in which he participated after one day, by chance, he took her to train and found that she suffered fewer autistic episodes, responded to calls and laughed. One day he proposed to participate in the Barcelona marathon with her because, "in addition to making her happy", he wanted to "show society that disabled children exist and that things must be done with them so that
they lead as normal a life as possible. He wanted to publicize the
disease and at the same time encourage other parents with girls in the same situation to move forward.
Since then, José Carlos and María have participated in five marathons, 12 half marathons and many other shorter distance events. In the Ironman Lanzarote, one of the toughest triathlons in the world, José Carlos plans to run the 42-kilometer marathon with María.
