They have the makings of authentic superheroes, but unfortunately one of their ‘gifts’ is that of invisibility. It is estimated that there are half a million in Italy: they are the ‘rare siblings’, children and teenagers (healthy) brothers and sisters of rare disease patients. They have dreams that look to the future but often give up pursuing them, and find themselves in the position of being ‘predestined’ caregivers, even if they don’t know it yet. A European Day is dedicated to them and is being celebrated today and for the occasion in Lombardy, which has established a regional one, a moment of reflection and debate was organized at Palazzo Pirelli in Milan. Objective: “To talk about it, to shine a light on these children, adolescents and adults who have so far been deprived of attention both from the institutions, who must understand that there is a share of the young population who lives a different daily life, and “inevitably” from the families, because when there is a serious illness it is difficult to see the entire family unit as a whole”, explains Stefania Collet, coordinator of the ‘Rare Sibling’ project of the Rare Diseases Observatory (Omar) to Adnkronos Salute.
But who are the invisible brothers? “I have been sibling since the age of 5, when Luisella was born, a beautiful little girl with 2 big blue eyes and very lively and cheerful”, says a ‘doyenne’ of the rare brothers, the over 60 Loredana, in one of the testimonies collected on the website of the Omar’s project. “My life as a sibling has been conditioned by disability: my choices of study, work, starting a family”, she admits. “For me and Luisella the battles continue every day, my great fear is not having time to realize my dream for her, the house where she can live peacefully and with adequate assistance and perhaps with some friends when I don’t have plus the strength to take care of her completely.” Slices of brotherly love that all the stories have in common. Like that of Sharon, 23 years old, who defines her younger brother Pietro, for her Pie friends, “a ray of sunshine that illuminates my existence”. It was difficult for her to realize that the time had come to leave Calabria to be able to attend a specialist in clinical psychology at a university in the North. “I understood that people have to move on in their lives. Even if reluctantly, I will have to leave my family. I can’t stay here.”
Taking flight, leaving home for a dream that is always inspired by the all-encompassing experience of the rare disease. Rare brothers are not born. And it is not automatic to have the tools to best face this intense journey of emotions, but also of loneliness. “At the beginning it wasn’t easy to adapt to the new routine: it’s as if they throw you on the football field without ever having gone to school”, said Andrea, Roberta’s brother, “a sensational rascal” in one of the testimonies. , as he describes it. “Not knowing what was happening to Roberta and your family was tough”, is another passage of his speech. “We understood the difficulties of the moment, but we missed the figure of the mother for a long time. The father did everything possible to keep us together, offering himself as a reference figure.”
“Healthy children somehow find themselves in a corner”, explains Collet, “the sacrifices begin early. And soon these children begin to ask themselves: what can I do with my life? In the experiential groups led by the psychologist that we organized with the Rare Sibling project”, a project also created to ensure that other rare siblings could recognize each other, “this thought often emerges because you are a caregiver in all respects even if no one tells you. And so many brothers and sisters they choose for themselves a job linked to the healthcare sector: they become psychologists, physiotherapists, because they have always seen these figures around the house, and they make it a profession, almost as if they already take charge and are ready, when the time comes, to take care of the own brother or sister”.
They are families who live experiences that are difficult to accept first and then manage. This was discussed at the conference promoted by the association ‘Nobody is excluded’, with the patronage of Alleanza Malattie Rare (Amr), Omar and Osservatorio Terapie Avanzate, as part of the regional day dedicated to rare siblings established by the Lombardy Regional Council last November. What can be done for these kids? “We can and must start working in schools”, urges Collet. “Opening a window. Many of these kids don’t talk about their condition either at home with their parents because they don’t want to create further worries, or with friends because they don’t want the relationship to be inauthentic, or at school because they don’t want favoritism or different treatments. Starting to do projects at school means giving them the opportunity to feel understood and welcomed but also preventing the bullying that sometimes exists towards rare diseases. What we hope is that siblings can understand that they are not alone”.
It’s the message that Collet took home from his meetings with the Rare Brothers. During one of these she was very struck by the words of Mattia Indorato, brother of Damiano, appointed Standard Bearer of the Republic by Mattarella in 2020: “Even when he lost his brother he continued to participate in those moments of confrontation – he says – Mattia understood that he would remain sibling all his life and he decided to also testify to the other boys what the loss of his brother meant to him, another very important element that is never talked about: the fear of death because, he explained, until then he had felt as if he was the only one in the world to have a brother with a disability. Now he and many others know that this is not the case.”
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