There are those who define them very aptly «mimetic children». They always take a step back so their families can take a step forward. Throughout Europe last May 31st the «siblings», sisters and brothers of people with disabilities. But Lombardy has decided to dedicate one Regional day ad hoc for the «rare brothers”.
THE siblings they are altogether an army of half a million children and young people (according to data from Omar, the Rare Diseases Observatory) who find themselves constantly in the balance between the indissoluble bond in a family that pushes for unconditional support and the need to live almost without being noticed, without bothering, without creating further problems for mum and dad, but in the same way dealing with desires, ambitions, daily fears, difficulties and above all responsibilities disproportionate to age. They are children of families who live all-encompassing experiences. Of illness, pain, fatigue, yet they are often invisible or become caregivers at a very young age.
The so-called «rare siblings» were at the center of the conference «Rare diseases and disabilities: what brothers and sisters live (and dream)» which took place on Friday 31 May at Palazzo Pirelli, promoted by the association «No one is excluded» with the patronage of the Rare Diseases Alliance (AMR), the Rare Diseases Observatory (Omar) and the Advanced Therapies Observatory. The Lombardy Regional Council had unanimously approved, last November, a motion to establish the Regional Day dedicated to rare siblingbecoming so the first region of Italy to dedicate recognition to the brothers and sisters of people affected by rare diseases. Hence the idea of organizing a conference and sharing food for thought with the world of the third sector and with those directly interested.
The president of the Regional Council underlined at the meeting how i rare sibling go through the path of care and pain of their sick sisters and brothers like ghosts: «Rare brothers are tightrope walkers, always suspended between a sense of duty and the desire to live one’s life to the full.” Furthermore, as doctors and psychologists point out, most rare diseases have a genetic basis and consequently the “rare brothers” also have the fear that the disease could manifest itself in them or in their children. But the conference had above all the merit of relaunching the appeal to pay more attention to these children and young people, listening to their voice and that of their parents. And accompanying them by the hand to take off their camouflage to finally look the sun in the face.
