Rett syndrome is a very complex rare disease . It is currently estimated to affect 1 in every 10-1,200 girls born. According to statistics, more than 3,000 people in Spain are affected by this disease. María is one of them.
Will you join us to learn about its history?
Rett syndrome is a serious neurodevelopmental disorder of genetic origin, which generally occurs in girls since it originates in the X chromosome. This syndrome, despite being one of the most numerous and well-known rare diseases today , is still a rare disease that affects all ethnic groups and is present throughout the world in a similar way.
According to statistics, it is estimated that there are more than 3,000 people affected by Rett syndrome in Spain, many of whom remain undiagnosed due to a lack of awareness of the syndrome and its main symptoms.
This disorder causes the progressive loss of motor and speech skills.
"Living in Spain with a rare disease is terrible," Maria's father, Josele, told us. "Socially, you feel isolated, administratively, everything is very slow, and medically, no one can tell you what's going on, which makes the whole process very anxious and uncertain," he noted.
And Rett Syndrome, despite the fact that we now have much more information than we did then, remains a mystery to many families. "María wasn't a normal child, and no one offered us a solution. She was in her own world, in her own bubble... and we couldn't connect with her," Josele explained.
From that need to connect with María, Josele realized that music and his guitar were able to draw her in. But... was that all there was to it?
"I'd been running since I was young, so one day I had the idea of going out with her. At first, it was spontaneous, a little time we took advantage of to unwind, but we soon realized the effect we were having was the opposite. María left her bubble and entered our world," Josele happily recounted.
The explanation, in reality, was simple. Feeling a speed higher than she was used to when driving her car, her senses became alert, she had fun, and she connected . "I had finally found something to share with my daughter, a common hobby," the father concluded.
Josele and María began running popular races all over Spain. Valencia, Barcelona, Seville, Vitoria... these were just a few of the cities father and daughter visited.
"It was incredible running with Maria. It was a father-daughter moment, a closeness and connection. Seeing her laugh... I still get emotional thinking about that time."
Little by little, Josele realized everything they could achieve together with this initiative. "We started 'Pushing the Cart,' a very exciting project in which all the money raised went solely and exclusively to the Sant Joan de Déu Hospital in Barcelona for its research into Rett Syndrome," Josele tells us.
Maria and Josele's story served as an inspiration to many people, not only those with Rett syndrome, but also those with other types of illnesses.
"People with disabilities, regardless of their major or minor disability, have the same feelings as everyone else," Josele noted.
With that guiding principle and the desire to continue raising awareness about Rett syndrome and fundraising for research, the documentary Línea de Meta was born, a very intimate and personal project for Josele and her family.
"I wasn't aware of our story until I saw the documentary. We were completely naked; we were ourselves, and there was no trickery or gimmickry," Josele commented.
Finish Line was nominated for a Goya Award for its harsh reality, strength, and hopeful ending. "The name Finish Line refers to that line you cross in every race, that line that indicates you're finished, but then a new one immediately appears. If someone sees me running alongside María and sees that our cause is just and decides to help us fund our research project, that would be my finish line in that race," Josele explained.
This documentary not only brought María and Josele's reality into the spotlight, it also gave hope to many families. "We rebelled against what was happening to us, which is truly unjust."
The Lanzarote Ironman is one of the toughest annual sporting events. It consists of a 3.86 km swim, a 180.2 km bike ride, and a 42.195 km run.
"In 2011, I fulfilled my dream: crossing the finish line of the Lanzarote Ironman pushing María's stroller," says Josele. "I swam and cycled alone, and when I got to the pits, I grabbed María and we ran the 42 km together. I can't describe that day or that feeling. People were eating and stood up to applaud us," he says, still moved.
As Josele points out, this is a complicated question because it depends greatly on the emotional and personal state of the person or family at that moment.
"I would tell them that they are not alone and that they never will be. Even if they don't see anyone around them, there will always be people pushing the cart with them. You have to fight... you come to this life to fight," Josele concluded.
