December 22, 1992, marks the first anniversary of Alessia's death. We wanted to remember her through a letter written by "our young people" (as we lovingly call them) in her memory.
After losing Alessia, they felt the need to share with others the experience they had lived through with so much love.
We also wanted to take this occasion to thank them from the depths of our hearts for the help—moral and practical—they have given us over these years and continue to give us with Emanuela.
Alessia's parents: Arnaldo and Vera
We met Alessia three years ago in the autumn: it was our first time volunteering. We were uncertain whether we would succeed, especially about whether we could build an easy, unprejudiced relationship with her and her family.
Her illness created particular difficulties with movement coordination and speech—challenges none of us had faced before. We didn't know how to handle simple tasks, what games to suggest, how to suggest them, what to talk about. Above all, we had to discover the best way to communicate with her.
There was also the matter of fitting into a family we didn't know: we weren't sure whether to use the informal or formal address with the parents, how to discuss their daughters' situation with them, or how to behave toward her sister Emanuela, who was affected by the same illness.
But with the initial help of other volunteers who already knew the family, we managed to overcome these first obstacles. Through a weekly rotation, our group organized daily assistance.
As the months passed, our awkwardness faded, and our relationship with the family became increasingly like a true friendship.
Meanwhile, the illness was steadily worsening. Because of constant dystonia, Alessia began to have difficulty swallowing and to communicate with growing struggle. Most notably, she could no longer sit in her wheelchair—a loss that cut her off from school and from many games she could play even at home. Alessia was no longer herself: her life had changed, and so had her appearance. The chubby, rosy face had become thin and pale, so much so that even a stranger could see suffering transparent in her features.
At first glance, her only signs of vitality seemed to be constant restlessness and agitation. But if you spent even a little time beside her, you could sense the intensity of her emotional state: her instincts, her pain, her impressions shone through her eyes with remarkable clarity.
A smile would sometimes appear on her face—that smile which, before the illness became devastating, had meant joy at the arrival of friends, a sign of rare serenity.
This expressiveness, despite her inability to speak, allowed her to share her feelings and deepened the bonds of affection among us.
Alessia was almost always present in our days, especially during the summers. Around her and her family, different people gathered, friendships formed, others grew stronger, gossip arose—but all in an atmosphere of warmth and closeness.
Because of her presence, many people were able to come together, and her story gave our volunteer work profoundly human dimensions.
Beyond this, there were lessons—lessons that Alessia, Emanuela, and their parents taught us. On one hand, her illness, set against our own worries, allowed us to sweep them away or at least put them in perspective. On the other, her parents showed us, by example, what courage, love, and hope actually look like.
After the turning point I mentioned, the illness was relentless. Coughing, congestion, the constant threat of choking, feeding difficulties, endless insomnia—these were the gravest problems.
In June 1991, Alessia was rushed to the hospital in Siena, where she stayed for about a month. We saw clear signs of recovery; but they soon proved to be false hope. In November she was admitted to the hospital in Lucca.
Alessia was slipping away from everything and everyone. After the last false hope, she died on December 22.
We thought we were prepared for the worst, but we were not: from her parents to all of us, nobody was truly ready for that day. Because, against all the logic of it, we held on to strong hope.
We cannot speak for her parents' love and courage toward Alessia during all this time: the entire nights spent watching over her, the patience and complete devotion to her care, the constant strength of spirit—these things are etched in our minds, and from them we learned.
What remains with us is profound emotion, a friendship deeply felt, and above all the memory of Alessia.
- Alessia's friends, 1992