Diego was born on June 29, 2021 in Imola, a small town in Italy. We spent his first six months happy. Diego brought home a happiness never felt before, his laughter spread throughout the house. Until February 4, 2022, the worst news a parent can receive came: Diego had GM1 gangliosidosis type 1.
He remains a cheerful and smiling child, but little by little he begins to lose skills upon skills. Despite this we tried to let him live as normal and peaceful a life as possible: we started traveling, and Diego turned out to be a perfect traveler. He enjoyed taking planes and discovering new European and Italian cities. We discovered that he loves water, so we took him to the sea and to the swimming pool where he could move around and have fun. We learned new ways to communicate with him, we had fun playing with lights and sounds. Although with a thousand difficulties, we managed to have wonderful experiences with him.
Then all of a sudden the disease became more and more aggressive. We started going in and out of hospitals for respiratory infections, and the seizures started. Diego started feeding with a tube at 19 months, and the seizures became increasingly aggressive and difficult to manage with drugs. Today, at almost 20 months old, Diego is a very sick child. He sleeps many hours a day. He can’t move anymore. Sometimes he needs oxygen to breathe well.
Despite everything, he still gives us a few small smiles, and his eyes show us how much he still wants to live and be with us. We are grateful for every single moment he gives us.
Diego passed away at a very young age on April 19th, 2023.
“You have been an extraordinary traveler. Your journey to the stars will be another fantastic adventure. Wherever we are, you will always be with us” — Diego’s mom