Over the next few weeks, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Dani.
This is my son, Daniel. We live in Brazil. Just before Dani turned 13, we found out he had LGMD2A, a condition we had never heard of. His symptoms were very mild — some difficulty running, bending down, and climbing stairs. A genetic test confirmed the diagnosis. It was a very challenging time for both of us, full of adjustments, questions, and fear. Dani had to stop doing sports and replaced them with physical therapy and drawing classes. He enjoys reading, watching movies or soccer games, and studying. He is the top student in his class, earning an excellence award at school.
This journey has brought us even closer. Dani’s birth was the happiest day of my life. But today we believe the happiest day is still ahead of us: the day he is cured. One day, while praying, I asked for his cure, and he gently corrected me, saying the prayer should be for all who have the condition, not just for him. Since then, that is what we do every day.