Atilio's Story is shared by his mom, Jorgelina Barral
Atilio is a wonderful child. He connects with people—especially with his friends and other children his age—through something that goes beyond his physical body; it’s his spiritual or astral body, as some might call it. He has a special presence, leaving a deep mark wherever he goes. Only his body doesn’t cooperate, and his Leigh syndrome doesn’t allow him to be a typical 10-year-old child. He also can’t always be awake and happy to share in many moments.
Our story is like that of many others. At age 3, Atilio, with many symptoms, received his diagnosis late, and the doctors simply told us, “There is no cure.” When his brother was born and also became sick, inheriting the syndrome and the SURF1 gene, we knew we had to do everything for them. One doctor told us: “Go for everything; there is still so much to do.”
Atilio celebrates being with friends, going to school, and sharing in social spaces. He loves listening to everyday life stories and won’t sleep when we have visitors—he wants to know all about them and not miss a thing.
If you’re reading this and have recently been diagnosed with the disease, take your time. Don’t rush your emotions. The day will come when you will be able to see us—we are here, navigating and traveling this same world. And when you feel a little stronger, I invite you to fight alongside us!
