New Year’s Eve, the neglected dreams of brothers with rare patients

Francesca, 18 years old: “For 2023 I would like more attention from schools for families with disabled children”

More understanding and flexibility from school for brothers and sisters of children with rare diseases and disabilities. It’s a new year full of little big goals for a little girl who made her debut in elementary school and has already surprised everyone with her feats. These are the dreams of 18-year-old Francesca Nicoletti, her ‘rare sibling’ wishes for 2023. This is what siblings of children with rare diseases call them. She and Andrea, 19, are the oldest in the family. And then there’s Roberta, on whom she weighs a diagnosis: campomelic acampomelic dysplasia, a variant of an already rare disease.

At the age of 6 she is already the ‘inspiring muse’ of a book, the first written by her father Fortunato. It is entitled ‘No one is excluded’, it was preceded by a blog and bears the same name as the voluntary organization (ODV) born from the experience of this family. Francesca, although very young, says she is fully aware of the importance of fighting personally to change something for those who experience the difficulties of such an all-encompassing experience. “This year – he tells Adnkronos Salute – I am the institute representative of my school and, when the regulation has to be rewritten with the principal, I will certainly try to put my hand in it. Because it is important to me and this is why I I’m also busy ‘politically’ in my school”.

His simple story is a snapshot of that of many other kids who grow up in families with rare patients. It is an experience that enters into the little things of every day. And since the end of the year is a time to take stock and wish the future, Francesca’s thoughts immediately turn to school: “If I have to express a wish for the new year, it is that we can broaden our understanding and knowledge of realities such as ours. Absences or lateness are an example. They can happen because you’re waiting for a change with the nurse, or because it’s a bad day for Robi or for various other valid reasons. But obviously at school you have to justify everything, and you don’t always come it happens”.

For Francesca, who lives in Milan and attends the Allende scientific high school, not everything is linear and predictable. “However, teachers are not always able to understand you – he says – and I think it happens because they are perhaps not informed or well educated about these situations. I’m not only talking about myself, but also about other kids with various other problems at home. It’s just that sometimes for them you are only there at school, and you don’t think about the fact that in reality you often bring the things you live at home with you. You move around materially, but the mind is always the same. Surely school could help with greater communication”.

The world of education “has problems with unpredictability – he reflects – It happened to me to skip scheduled questions and the automatic reaction could be: I came towards you, planning it, and you didn’t want to do it. And it’s difficult to explain that There is very little planned in my life. More flexibility would be enough in certain situations”. Francesca’s thought is that most of the regulations of institutions in Milan do not seem to have suitable rules to protect and help children with this type of difficulty: for example, those who have a brother or sister with disabilities, or a child who has to take care of of their parent who is unwell or disabled, or has other problems”.

There is also a place for Roberta on the wish list for the new year. “I hope for my sister that she can grow up, achieve her goals, even those that seem small. This year she started elementary school and I’m helping her with her homework: the fact that she has learned to write even just her name, and every time she does, it’s a shock to me. She manages to achieve goals that we set for her, I’m thinking of my mom in particular, and goals that she sets herself. And I hope she gets as big as possible. Then we’ll see . I don’t like thinking about the future too much, because there is always this uncertainty. So you enjoy the present. If I think about just a year ago, Roberta’s journey was incredible, helped by school. A wish for her is not to having to fight for her rights, even if I find it hard, of never having to feel marginalized. Sometimes I feel like this too, for the simple fact of having experienced certain situations. In the context of school, I think it’s bad not to feel included” .

Francesca also takes stock of the year that ends today, which shows the weight of Covid. “For us it never went away – he explains – Many have forgotten it. But in the family even before it arrived we always had to be careful, keep the masks on at the first sneeze, see the nurses with the masks, anyone who comes from outside, even grandparents relatives , and now tampons, etc. Maybe there was even a little more pressure this year, because before everyone protected themselves, now they don’t and we need to be even more careful”.

Francesca strongly believes in the role of the school, also to teach the ‘normality of diversity’. “It annoys me when people talk about disabilities just for the sake of it, perhaps to win votes or because it’s a dedicated day. But if you start at school, a school assembly is enough and then another in another school, then a newspaper writes, from one thing another is born and maybe something changes. We have all been to school, even the 50 year olds of now. So if you start doing something in this area, to raise awareness, educate, then the results will last for a long time in my opinion they can be seen. Where else can you do it? Growing up in a certain context helps, it allows you to understand others more, to understand that there is no univocal concept of normality, but if we tried to do something common, your normality it would become much more similar to mine and, if you go and see, all this difference is gone”.