The Guarantor of the disabled of the Campania, lawyer Paolo Colombo intervenes on the case of the child from Pozzuoli affected by SMA and who cannot go to school due to lack of assistance.
"Child with SMA stays at home because there is no nurse at school and classmates are not going to class out of solidarity. Institutions must find a solution. Not respecting the rights of one means not respecting the rights of all", he says in a note.
It happened in the Vittorio Emanuele headquarters of the IV Pergolesi comprehensive institute in Pozzuoli. Where 180 families mobilized against the discrimination that affects the two children, Lorenzo, in particular.
The little boy is in first grade, he loves being in class with his friends and studying. But he suffers from SMA, spinal muscular atrophy, which prevents him from regularly swallowing saliva. And, to keep his airways clear, to prevent him from suffocating, he needs to periodically aspirate mucus and liquids.
A nurse must do it, as prescribed by the doctors at the Santobono pediatric hospital who are treating the child. Because an error in the maneuver could cause irreversible damage. The nurse, however, is a figure that is not present at school.
“And that the ASL Napoli 2 refuses to grant – recalls the Guarantor – claiming that a specialized social health worker is enough, like those who – on behalf of the Municipalities – often assist disabled children in our schools.
In the absence of a nurse, Mrs. Brunella, Lorenzo's mother, is forced to stay near the classroom to intervene when necessary. Lorenzo's mother, when the child was in kindergarten, was forced to provide for herself, since it was not compulsory school.
But now that Lorenzo is in first grade, a solution must be found, because it is his right to be at school. Alongside Lorenzo and Brunella are all the parents of the school. The Municipality, the school, the family and Lorenzo's doctors will meet soon.
In the meantime, after the first mobilization, the operator who can help Luca with insulin has arrived. But for the nurse, we are waiting for certain indications from the ASL Napoli 2.
The Guarantor of the rights of people with disabilities of the Campania Region, the lawyer Paolo Colombo declares: "It is necessary that the institutions (Local Health Authority, Municipality and School) find a solution. It is right not to look the other way. Not respecting the rights of one means not respecting the rights of all."
Article published on 22 January 2024 - 14:49
Video Chronicles
