Until she was 18 months old, Maria Ferre was a healthy baby. Suddenly, she was struck with Rett syndrome, a physically debilitating condition that affects approximately 1 in 15,000 female children worldwide.
Symptoms of Rett syndrome include loss of speech and motor control. In Maria’s case, it resulted in extreme disability.
Faced with the powerlessness that accompanies fighting a condition without a cure and without widespread public attention, her father, Josele, turned to his passion to help raise awareness. He started running marathons with his daughter, pushing her in a stroller, while the wind caressed her face, bringing her joy.
Josele Ferre desperately wants to keep the world from forgetting Maria. The documentary "Linea de meta" ("Finish Line"), which also features her mother, María José, and her two younger siblings, Cristina and Dani, captures the entire family's resilience in the face of this hardship. Throughout the year, they travel as a family to different sporting events.
Paola García Costas, the director and screenwriter of the documentary, is a journalist from Sevilla who specializes in health reporting. She has reported on families facing a range of illnesses, "from common things like diabetes to rare diseases," she said at the Giffoni Film Festival, an Italian festival that screened "Linea de meta" in July.
Trailer for the documentary "Línea de meta" from Paola García Costas on Vimeo.
There are fewer than 3,000 patients with Rett syndrome in Spain. The condition, which almost exclusively affects girls, is caused by a mutation in a gene called MECP2. García Costas immediately found something striking in the story of Maria and her family, and felt the urge to explore it further in documentary format. "Their struggle was very exceptional,” she explained. "The image of Josele running with Maria was a very powerful visual metaphor that should be seized." Escandalo Films decided to produce the movie with a small team and a limited budget. The film has been screened at many international festivals, and has received several awards. "When I started running in 2008, my goal was to shed light on the disease. I started running with Maria because I discovered that it was a kind of therapy for her. And for a family that was in distress, it was also a kind of therapy," Ferre told HuffPost Spain. "Gradually, participating in the events and media attention helped me to raise money." He also seeks to promote medical research that will advance treatment of the syndrome, or even to find a cure. Pharmaceutical companies appear hesitant to invest in Rett syndrome research, largely because it is a rare condition, and medical breakthroughs would not prove profitable. "All of the resources I obtained, I donated to the Sant Joan de Deu Foundation, the only research project that existed with a superb management transparency, but it was forced to close due to lack of funding," said Ferre, who narrates Maria’s daily life on his personal blog.
I started running with Maria because I discovered that it was a kind of therapy for her. And for a family that was in distress, it was also a kind of therapy. Josele Ferre
Ferre is familiar with at least two institutions currently investigating Rett syndrome, both based in Barcelona. In addition to the Sant Joan de Deu, there is the IDIBELL (Bellvitge Biomedical Research Institute). This brave father celebrates that research on the condition is underway. "And it’s on the right track," he said. However, he believes that there is a lot more work to be done. "Now we need to help the families directly. It is very difficult today to be able to cope with a disease like Rett syndrome,” Ferre said. “We need to support the Rett Syndrome Association of Spain, which represents the majority of girls with Rett syndrome in this country.”
García Costas emphasized the "enormous generosity and courage" that Maria’s parents demonstrated in front of her camera. José María, Maria’s mother, revealed harsh truths in the movie that she usually avoids in the family's day-to-day life, in order to be able to keep going.
The documentary captures the compassion among a family forced to live with Rett syndrome. It seems that they can only count on each other.
"There should be a state institution that provides this form of support," said Ferre. "Parents should not have to fight on two different fronts -- with the disease, and with the bureaucracy of state institutions -- as they do now."
Every marathon brings the Ferres and many other families closer to overcoming their biggest enemy.
This story originally appeared on HuffPost Spain and has been translated into English.