PEDRO | CANARY ISLANDS, SPAIN

I’ve always considered myself a lucky person. Despite the difficulties, I believe I’ve been fortunate in life: lucky to have the family I have, lucky to have the friends I have, lucky to have a job that makes me feel useful and fulfilled, lucky to be born where I was (Canary Islands) and to live near the sea. Perhaps because of all that, a higher force had prepared the greatest obstacle of my life for me…

My name is Pedro, I’m 36 years old, and I have Usher Syndrome type 2A. I love playing the piano, going for a run in the mornings when there are not many people on the street yet, and traveling the world. I was diagnosed with the disease at the age of 20, even though I had hearing loss from birth. It wasn’t until then that I began to lose my vision and became aware of the future that awaited me. A shock, a bucket of cold water, everything you can imagine… but I’m still alive.

A lot of personal work and reflection, along with strong support from my family, were the main pillars that gave me strength and kept me going. Today, I can say that despite it all, I am happy. I would be lying if I didn’t say that I wish with all my might to have the vision I had at 20. But always with my feet on the ground, looking ahead, and facing this disease that I hope will one day find a cure.

My greatest wish is to watch my son grow, to be able to provide and give him enough to mean to him what my father meant to me. And all of this, always hand in hand with my unconditional love, my guiding light in the darkness. Thank you for helping us keep the light on.

If you’d like to help us fund groundbreaking research to defeat Usher syndrome, click the Donate button.