Macarena Fernandez Puente

Guerreros Púrpura es una asociación sin ánimo de lucro dedicada a mejorar la calidad de vida de los niños y niñas y sus familias con afectaciones o enfermedades neurológicas y metabólicas. Para conseguirlo trabajamos en distintos ámbitos: •Investigación •Mejora de la calidad de vida de los niños y niñas afectados y sus familiares •Apoyo psicológico y emocional •Terapias de rehabilitación •Orientación a las familias en la identificación de recursos y profesional •Educación •Ocio y tiempo libre

We are a non-profit association consisting only of 28 people affected by Nemaline Myopathy and their families, distributed throughout Spain. MN is a rare neuromuscular genetic disease (1:50,000 births) without a cure and treatment, with almost non-existent study. We have managed to launch a research project. Would you help us improve the future of our beloved ones? We'll be greatly grateful! www.yonemalinica.es

I'm Martin, they call me Tintin, I'm 3 years old. I was born with some malformations and one of them was a cleft lip, for which they operated on me when I was 3 months old. They had given my parents full assurance that it would be a simple operation, but something went wrong and I ended up in the Ucip with mechanical ventilation and deep sedation, and one day, they accidentally extubate me and I went into cardiorespiratory arrest for 15 min, and because of that accident I have cerebral palsy.