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My name is Agustín, I am 10 years old, and I was diagnosed with Duchenne muscular dystrophy at the age of 4.
Duchenne muscular dystrophy (DMD) is a genetic disorder that causes progressive muscle weakness and degeneration. It is the most severe form of muscular dystrophy and primarily affects boys. This condition is caused by the absence of a protein called dystrophin, which is essential for maintaining healthy muscles.
Symptoms usually appear around the age of 4, and over time the disease affects the entire body. Muscle weakness gradually progresses, impacting the legs, arms, neck, and other muscles. Joint stiffness, contractures, and scoliosis may develop due to the weakening of the back and supporting muscles. DMD can also affect the heart, leading to cardiomyopathy, one of the most serious complications of the disease.
There is currently no cure for Duchenne muscular dystrophy, but ongoing treatments and therapies are essential to improve quality of life and help slow the progression of the disease.
My medical team is based at the Neuromuscular Hospital of Rochester, where I am cared for by an incredible group of specialists who support me every step of the way. Since my diagnosis, my parents have worked tirelessly to ensure I receive the medical care, therapies, and support I need.
We are deeply grateful for every prayer and every expression of support for Agustín, a truly brave, strong, and inspiring boy.






