“TOEven if I try to think of anything else I can’t. It’s as if there’s a wall that anguish keeps breaking down. Even if I fix it with a tile there’s this voice that always tells me something could happen. I believe I speak for many rare brothers. I can never stay calm». As Ernesto, only 10 years old, talks about his relationship with his little sister Eva Luna, suffering from a rare disease. Ernesto is a rare sibling: one of the many children – 450,000 in Italy – who live next to a brother or sister with a rare disease or tumorand which too often remain invisible.
Growing up in the shadow of sick siblings. The story of Ernesto, 10 years old
While all attention is focused on the child with the diagnosis, siblings listen, understand and silently suffer the impact of the disease. NoThey are not patients, nor caregivers. They are children who live a complex reality, bigger than themselves, and deserve specific attention. They adapt to hospital visits, missed school events, and times when they are unintentionally neglected.
But they also try to be a source of strength, support and joy for their suffering little brother or sister. Like that of Ernesto, who is affected by progressive familial intrahepatic cholestasis – one rare genetic disease that prevents the liver from producing and transporting bile properlywith the risk of dprogressive liver years. «In the midst of all these bad things», he explains, «there is also something very good: when you see your brother or sister smiling, feeling good and playing with others you feel a happiness that lasts a long time, it’s an emotion that cannot be describednot even with all the words in the dictionary.”
A fairy tale to tell the Rare Siblings
It is for Rare Siblings like Ernesto that patient associations ask us to dedicate it a national day, urging Parliament to vote on the bill that establishes its institution.
On the occasion of the event “Rare Siblings: giving light and value to those who are always there, but cannot be seen”, held today in Rome at the Luigi Sturzo Institute, a dedicated register was also presented. AND The spring of the butterfly wolf, written by Federica Ortolan and illustrated by Giulia Orecchia, created by Carthusia Edizioni with the patronage of OMAR and Rare Siblings and the unconditional contribution of the biopharmaceutical company Ipsen. The book supports the initiatives of AITC – Italian Cerebral Tumor Association, Alagille Italia and PFIC Italia Network. A fairy tale that wants to help the Rare Siblings regain lightness of their age, telling the depth of the fraternal bond beyond the burden of the disease.
The protagonists of the book are the testimonies of three formidable kids, and one of them is Ernesto.
Children learning to step aside
«When a diagnosis of a rare disease enters a family, the whole family is overwhelmed by fear, confusion and helplessness: not only the diagnosed child, but also the siblings» comments Francesca Lombardozzi (PFIC Italia Network Odv). «They are children and young people who quickly learn to step aside, wait their turn and be strong, but they too need to be listened to, welcomed and understood. The fairy tale also helps to counteract the social stigma linked to rare and non-rare diseases, to normalize the complexity of the emotions and situations they experience daily and to preserve their psychological balance” continues Francesca Romana Berrini (AITC – Italian Association of Brain Tumors).
Establishing a National Day of brothers and sisters of people affected by rare diseases is the first step to bring out their experiences, promote support initiatives and collect updated data. In Italy, according to the only data available, it is estimated that they are approximately 450,000 children under 16 have brothers or sisters affected by rare diseases — a 2018 figure that needs to be reviewed and explored.
In the photo, from left to right, Francesca Berrini (Italian Brain Tumor Association), Francesca Lombardozzi (PFIC Italia Network), Irma D’Aria (moderator), Hon. Ilenia Malavasi (Chamber of Deputies Social Affairs Commission), Martina Brotto (Alagille Italia).
The bill for the National Day of Brothers and Sisters of People Affected by Rare Diseases
The bill to establish the dedicated day was presented to the Chamber in January this year by the Hon. Ilenia Malavasi. The objective is that May 31st will be dedicated to Rare Siblings, in harmony with the International Day which is celebrated in Europe, in conjunction with the European Sibling Day, and that schools of all levels can promote educational, training and information initiatives to deepen knowledge of rare diseases and the condition of these children and young people.
“Being brothers or sisters of a person with a rare disease means sharing a life journey made of love, responsibility and resilience, often lived in silence.” concludes the Hon. Ilenia Malavasi, Social Affairs Commission of the Chamber.