We are Jessica and Antonello, parents of four. Our first son, Samuele, was born on the 29th of March 2011 after 27 weeks of pregnancy. From a lot of monthly ultrasound scans it all seemed ok, but an infection occurred and a premature birth took place. Then he went trough a neonatal ICU at the hospital of Bologna and, after some months form the discharge, he was diagnosed with a spastic tetraparesis. From then on it was an ordeal full of difficulties for us: we thought it would last only a few months, but months became years…

When a couple wishes for a child, they always wish for good things, and they think it will be all fun and games. However for our family it was the starting point for terrible moments, where everything went into crisis, the desperation was high, and we needed a lot of help…both practical and psychological help. There were moments where I wished to feel light-hearted, and to have the possibility to go away from everything and everyone in a far place, but then reality put my feet back on the ground. Every day Life asked us parents to be strong, to be full of energy to keep up with tons of commitments like medical visits, physiotherapy and all kinds of controls. Nights were often sleepless, they were difficult to manage when your son cries, is nervous, or doesn’t eat…and we kept it together for our sake and for the sake of the love we have for Samuele.

Life went on and we dealt with nursery school, kindergarten, elementary school, in a constant struggle.

Furthermore, like a little crazy mum, along with my husband we decided to have other children so, in order of birth, Lorenzo, Simone and Riccardo, the last born, came. During the last pregnancy we discovered that both my child and I have a rare disease, the COL4A1-A2 syndrome and we also discovered that out of 4 children, only Samuele had inherited this gene mutation from me. We then extended the genetic screening to other relatives of mine, and it turned out that my mother has that kind of gene mutation, even though she has a lighter form.

Now the situation is better than in the past, we try to give Samuele the possibility to live in full sociability, to pursue his hobbies in an inclusive setting.

Samuele deeply loves cars, He loves his tablet and whenever is possible we take him to race with adjusted karts, and once a year we go to the “6 ruote della Speranza”. An event that takes place in Monza’s racetrack where car lovers with disabilities can race with Ferraris, vintage cars and off-road car.