Rare diseases, Francesca tells the story of her daughter Sofia: “My little girl with beautiful eyes”

Sofia is 5 years old and lives in Imperia, on the sea. But on the beach he cannot go there because Sofia cannot walk and Ligurian ups and downs make his movements more difficult. When she was two, Sofia was diagnosed the Rett syndrome, A rare disease that almost only affects girls gradually depriving them, after a period of apparent normality, of the skills acquired. For this they are called “Girls with beautiful eyes” because when the disease makes words and gestures impossible, they communicate through the gaze. To date there is no cure, but above all rehabilitation can do a lot to help these girls defend their skills from the progress of the disease.

“We discovered his illness when he was two years old. I went with her to vaccinators “says his mother Francesca. “In the same location there was a rehabilitation gym, and I asked if I could talk to someone. He worried me the fact that he didn’t walk yet, something inside me told me it was not just a matter of time. Somehow it can be said that we were “lucky”: the health director of that center had diagnosed Rett’s syndrome a short time before, one of the five who live in Liguria like us, and immediately recognized those signs that I, as a mother, was trying to interpret for months. From that day our path began, a new path, made of questions, fears, acceptance, strength ».

During this path, Francesca and her family met Airett, Italian Rett Association, which for many years has supported the research to improve the quality of life of girls with Rett syndrome and their families. And they also do it through the Airett campus, which was born in 2012 and is an avant -garde program that, under the guidance of expert doctors and therapists, combines technological innovation, rehabilitation and support for families to monitor and enhance the cognitive, motor and communication skills of each child.

“Each child is different, but all live a progressive loss of skill”continues Francesca. «For Sofia it was like this: he lost the use of the hands, he cannot walk and probably he can never do it. We are surrounded by the sea, but with the wheelchair it is difficult to reach it. But all this does not mean that Sofia cannot live a full life, made of relationships, learning, emotions ». Next to her is Isabel, her little sister. “Among them there is a profound bond, which feeds on small gestures, of looks, of a complicity that grows every day. Isabel soon learned to interact with Sofia, to involve her in the games with the naturalness that only children know how to have. Observing them together is one of the most true and precious things that my daily life gives me ».

Today, thanks to support, Sofia can attend kindergarten, like her peers. “We did everything possible to make them have all the hours of support to which he has the right, and we did. It was not easy, and it is never: every year we start from the head, with new support teachers, to whom everything must be told, explain his needs, find a way to enter into relationship. But when things work, Sofia lights up. And I understand that it was worth it
Penalty ».

Precisely because for Rett syndrome there is no cure, rehabilitation can really make a difference. «Rehabilitation combined with the support of technologies is the only way we have to help our girls preserve the skills they have, not to lose them, to live better. But it is a road that must be traveled constantly, under the guidance of competent experts. That’s why the Airett family association for us parents is a fundamental point of reference. It is a network that supports us, it orients us, makes us feel less alone. There I found concrete answers, prepared people, moments of authentic sharing. There too, like mom, I felt welcomed. I was able to compare myself with other families and breathe a little of that lightness that often is often missing in everyday life. The campus is not just a rehabilitation center: it is a place where we return to hear that we are not alone. There are days when tiredness makes itself felt. Days when everything weighs. But there are above all moments of light, normal, beauty. Sometimes they must be sought with patience, but they are the ones who keep us up. Our life is different, yes. But for this it is less rich ».

To support the Campus Airett, which usually takes place at the end of August, in a structure immersed in nature in Lucignano, near Arezzo, and make this special space accessible to an increasing number of families, from March 24 to April 6, 2025 Airet promotes the fundraising campaign **Listen to his eyes. ** With an SMS or a call to the solidarity number 45596 you can donate 2, 5 or 10 euros. «If I chose to tell a piece of our story, it is because I believe that sharing it is important. For those who face a child’s disease and sometimes feel overwhelmed. Because knowing that he is not alone can make a difference. And because, even in fatigue, the beauty is there. Sometimes hidden, but there is. And it is worth continuing to look for it together ».