Meet Caio

Caio was diagnosed when he was two and a half years old. Today he is 31 years old.

Before everything changed, Caio walked, talked, and played soccer. Then suddenly he developed a respiratory infection with fever and a generalized seizure.

At that time, there were no specific neurogenetic tests available. Through magnetic resonance imaging with spectroscopy, doctors identified demyelination of the myelin. Gradually, Caio lost his motor and speech functions.

Today he is quadriplegic, but stable. We care for him with dedication and love, overcoming the challenges of this devastating disease. With faith, we will win.

He was initially diagnosed with Van der Knaap syndrome. In 2024, he underwent additional screening for leukodystrophies, and that is when the diagnosis was confirmed as Alexander disease.

I have always persisted in my search for treatment, and I found this global project that fills me with hope every day.