By Matteo, EEC syndrome, Italy, October 25, 2018
I love soccer and I owe it so much. I am affected by a rare disease and, unfortunately I have never had the possibility to see my first child to be born, due to the same syndrome I have.
In order to give a deeper meaning to my life, after having being hesitant in the past, I have decided to face my fears and to get into the “game” (or to step up my game). I am doing this to give a greater visibility to rare diseases, to make them known to the world, and mostly help to beat them.
I have always lived and played soccer to feel normal and not to be ashamed, while I was trying in any way I could to hide my feet even to my teammates… my soccer shoes were like astronaut Wonder’s helmet.
Following Stephen Hawking’s (the most famous astrophysicist of all time, recently deceased) words: “Remember to look up at the stars and not down to your feet”, and also echoing latter Sacchi’s words : "In soccer, what really matters is the mind and not the feet”, I truly wish that this photo and this message will have the largest possible visibility and dissemination.
All the above said with the most important prospect in mind: to organize a soccer match as best as possible. A real match with many champions playing on the field, which will take place on February 28th 2019 in Trento (Italy), on Rare Disease Day. On this occasion there will be a fundraising with the goal of winning for rare diseases.
I am asking for a concrete support, in any possible way, to organize my event and spread my message.
Facebook: La Partita Rara
Find others with EE syndrome on RareConnect, the online platform for people affected by rare disease.