NEssuno would choose to accompany childhood Of the children with the fighter soul, but often there is no alternative. You have to study symptoms, learn to make stings, decipher laws and documents. And fight the disease with (or cons), with (or cons) the health system, school, bureaucracy.
Pietro and Francesca started doing it when the pediatrician, two years ago, told them: “Sofia has type 1 diabetes. Run to the emergency room“. Their girl was 9 years old, she was tall, thin, sporty, but for a few days she had started to have a lot of thirst and the stimulus to urinate was continuous. To get to a diagnosis it was sufficient to evaluate blood sugar, with a small puncture on the fingers. A few seconds and his life has changed forever.
“We only knew the diabetes of the elderly who have to limit sweets,” says the mother. “Instead, there is also a type 1 diabetes, just 10 percent of cases, an autoimmune disease for which the immune system attacks and destroys pancreatic cells that produce insulin, making the daily administration of this hormone necessary to survive. It mainly affects children and young people ».
Diabetes, a disease that does not jump on Sundays
After the first visit with the doctors of theINPS, Sofia has been recognized by 100 percent And the right to perceive the frequency allowance, a measure that certifies “persistent difficulties in performing the tasks and functions of the minor age”. In practice, theINPS He established that the girl received a monthly allowance of 333 euros, but only for days of school attendance (during the summer holidays, however, the contribution is suspended). “This limitation on school days seemed to us to be an injustice»Remember Francesca. “We considered the recognition of the accompanying allowance, given to those who need continuous assistance.”
The absolute deficiency of insulin, in fact, is incompatible with life. «For this reason, Sofia must take insulin before each meal, candy or sweetened drink. And it is necessary to understand each time what the correct quantitative is ». To do it “The carbohydrates present in the foods must be counted and its psycho-physical status must be evaluated: If you are worried about a verification, for example, it serves more. But if it runs, it must reduce it. «For a child, these calculations are extremely complex, almost impossible to manage alone; That’s why the presence of an adult is indispensable ». Francesca and Pietro began to inquire, to confront other parents in the same situation. And they understood that the only possible way was to file an appeal against INPS.
Several times they wondered if they were making the right choice, if it weren’t too big a battle. «But our daughter deserved to know that her parents were ready to fight for her, even when the road appeared uphill. We wanted to teach her that the response to injustices is not silence. That it is necessary to train to ask, and, if necessary, to demand. And fight. And then, We were not fighting against someone, but for something: the right of Sofia, and of children like her, to see her needs recognized. Type 1 diabetes is still too little understood, as well as the impact on the life of those who suffer from it ».
Sofia must take insulin before each meal, candy or sugary drink.
Chronicle of our difficulties
Francesca and Pietro have chosen to rely on a lawyer, Claudia Porcu, expert in issues related to disability; they appointed the medical examiner Stefano Tambuzzi as their technical consultant for Explain the impact of type 1 diabetes on children’s lives; They collected dozens of documents and medical relations, preparing to face an obstacle course. «The system seems built to discourage you, or worse, to make you feel wrong. You have to demonstrate that diabetes management has upset your daughter’s life and yours, “says the mother.
«We had to clarify in detail that, although the device that is used today, the microinphusor, slightly smaller than a mobile phone that releases insulin represents great progress than injections, does not cancel daily difficulties. That the needles must have changed every 72 hours, the sensor every ten days, and we parents are dealing with it. But above all, we had to reiterate what really matters: our commitment, and that of Sofia, in maintaining its blood sugar levels within safe parameters, avoiding the risk that her life is in danger. And this happens during the day as at night; At school, in the gym, in the park, at home ».
There should be a nurse at schoolbut activate its presence is a titanic company. «Many parents are forced to leave their jobs because, when their children attend the nursery or primary school, they spend hours nearby, in the car or in a free class ready to intervene with a dose of insulin or a sachet of sugar. The management of a child’s diabetes can be complex for a teacher. The same happens during sports activities, school trips or summer centers ».
The most critical moments
«The process of the practice required 18 months: it was mostly a flow of documents between the Court, the lawyer, the medical examiner and the parents. Sofia was involved on a single occasion: when she had to meet the CTU (office technical consultant), the expert in charge of the judge to verify our requests. “It was the hardest moment. Our daughter had to answer pressing questions; Telling what is not autonomous; Explain why, since he has diabetes, mom and dad have always been next to her. In some moments he even put himself to cry, “recalls Francesca. “From that appointment we came out destroyed, with the heart in pieces, the fear of having challenged an invincible giant and the pain of having subjected our daughter to too hard test”.
In the end, however, the Court established that Sofia was entitled to the accompanying allowance. But that’s not all. Just in those days, INPS has changed the guidelines for the recognition of disability in minors with type 1 diabetes: from that moment, all children and teenagers with this disease would have received the accompaniment at least up to 14 years, the age in which the‘INPS He assumes greater autonomy in managing therapy «Davide also won against Goliath. Not because it was stronger, but because it was right. And so it was for us »concludes Francesca.
New protections for minors with diabetes
«The battle of Francesca and Pietro, together with that of others, has contributed to bringing out a reality that could no longer be ignored: new technologies (such as blood sugar sensors and micro -infusions) facilitate the management of disease in minors with type 1 diabetes But they do not eliminate the need for supervision by the adult »comments the lawyer Claudia Porcu.
“The new guidelines, released by INPS at the end of September, suggest that, from now on, to minors of 14 years of age, the accompanying allowance (i.e. 531.76 euros For 12 months, for a total of 6381 euros per year) instead of the frequency allowance (333.33 per month for only 9 months of school, equal to about 3 thousand euros). From 14 to 18 years, then, INPS will evaluate whether to confirm the accompaniment or instead recognize the frequency allowance. In all cases, the condition of severe disabilities is confirmed with revision for the age of eighteenth year of age.
I woman © RESERVED REPRODUCTION