Until he was 17, Luca embraced the world and the future with infinite optimism and a zest for life.
He was always a sunny, optimistic child first, and then a boy, in love with life: the kind of person everyone loved and sought out because it was good to be with him…
Then in August 2023, the diagnosis came, and everything for him, and for us, suddenly changed.
A sentence, the name of a disease whose existence we didn't even know: our world collapsed.
Slowly, Luca began to show the first difficulties: morning myoclonus, epileptic seizures that became increasingly frequent, the inability to speak fluently.
And then, starting to forget, being unable to find words, no longer knowing how to write, not being able to tie his shoes… every day, another piece was added.
His friends, scared by this illness, gradually abandoned him, and loneliness became an enemy to fight.
Luca had to understand what it means to have a rare disease, giving up a teenage life: there was no more beloved rugby, no going out to discos, no independent holidays, none of what a boy his age could do.
Currently, there is no cure to help Luca and the very few young people suffering like him.
Research is making great strides, but time is running out, and the disease degenerates quickly.
Every day is precious, every minute is precious to fight a disease that leaves us no time.
