Improving their mobility, sleeping without having dangerous apneas and learning to communicate with their eyes. Every improvement means the world to girls with Rett who need around-the-clock care. It means so much to their families too, whose greatest wish is to find treatment which will improve their quality of life. Today, Rett's syndrome has no known cure and affects one in 10,000 girls.
The Mi princesa Rett association fights for the daily well-being of the girls and provides grants so they can get hippotherapy, physiotherapy, hydrotherapy and music therapy. All these therapies would be impossible for a family on an average income to afford. The association also supports a team of researchers who are working towards finding the combination of drugs and nutritional supplements that can attack the mechanisms by which this disease causes so much damage. They do not dream of discovering a short-term cure but of early treatment that can adapt to each stage of the child's development.
Sara is one of our Rett princesses. She arrived from China as a baby, 12 years ago. She interacted with her environment like any other child: she would chatter and play with her dolls, but she suddenly stopped doing this and withdrew into her own world. Her father Jaime is one of this story's superheroes. He is one of the parents who forms part of this association which was created a little over five years ago to raise awareness of Rett Syndrome and to financially support research into this disease at the San Juan de Dios Hospital in Barcelona, the only research center of reference in Spain.
The association provides music therapy, hippotherapy and even dolphin therapy. On Tuesday Sara does hippotherapy and physiotherapy; on Wednesday she does music therapy and she visits an osteopath every two weeks; on Thursday she does physio, as well as lots of other activities. Thanks to this association, Sara and the rest of these princesses receive help to pay for the treatments that can cost up to 1500 euros a month.
“I fight for Sara, but at the same time I'm fighting for her, I'm also fighting for Marta, Noelia, Irene, and all the princesses”, explains Jaime, who is grateful to the association for giving him the security to not feel alone in facing Rett syndrome together with his daughter and the daughters of the other parents.