Neonatal screening: if being born in one region or another makes (still) the difference between being saved or dying
Mother Giulia and her little Gioia, affected by MLD
There are battles that begin far from the halls of power . Not behind ministerial desks, but at a kitchen table, amid the tears of a grandfather or the broken embrace of a mother. They are battles of ordinary people who do not give up, do not surrender to the idea that pain, especially that which affects children, can be archived as a fatality. They begin from there and become a movement, a civil push, a collective commitment. And sometimes, they become law. This is the case of neonatal screening for rare but devastating diseases such as SMA (spinal muscular atrophy) or MLD (metachromatic leukodystrophy): serious genetic diseases, often fatal, but for which effective therapies exist today, as long as they are administered immediately, at birth. This is the point. Because, as the families involved know well, a late diagnosis means a condemnation to long suffering, a death sentence . Instead, an early diagnosis can save a life and make it flourish.
Puglia: a law born from the tears of a grandfatherIn the heart of Puglia, the turning point comes thanks to the courage of those who transformed a private pain into a public mission . “Once upon a time there was a grandfather who cried,” said councilor Fabiano Amati. That cry did not go unheard. It became a proposal, then law: neonatal screening for SMA is now mandatory for all children in Puglia. Ten cases have already been identified, all diagnosed through screening. Ten children who are now growing up with a prospect of normality, not thanks to a miracle, but thanks to science and a health system that has chosen to look beyond bureaucracy , listening to life. “A stumble,” Amati calls it. A stumble that changed destinies. That demonstrated how pain, if welcomed, can become law. And the law, if applied with foresight, can become hope and life.
Emilia-Romagna: the revolution begins with a glanceHundreds of kilometers away, another story of pain and resistance is carving a deep furrow. It is that of little Gioia, a child from Emilia struck by MLD . A diagnosis that came too late, in a region where neonatal screening for this pathology is not yet foreseen. Faced with the silence of the institutions, her family, led by the hand of the Association Voa Voa Amici di Sofia Aps and the founding member Nek , chose to react. Without resorting to violent protests, but rather using only images: faces, gestures, stories of real life. Thus was born “With your eyes”, an audiovisual project promoted by the Association itself that showed Italy what it means to live with a preventable disease, if only it had been diagnosed in time.
The result? Thousands of signatures collected, an emotional wave that hit and moved public opinion – even the world of sports responded last May 1st, when Modena Calcio took to the field for the derby with Reggiana, wearing t-shirts with the words “A kick to MLD” and the beautiful image of Gioia’s face. Finally, an answer: the Emilia-Romagna Region announced a road map for the introduction of screening for MLD, marking a historic change of pace. Little Gioia can no longer be treated, but – as m amma Giulia Ferrari altruistically says “we can prevent other children in the future from suffering what she is suffering”.
A conscience that rises from belowTwo different stories that speak the same language, that of courage. Of determination. Of love that does not stop. Demonstrating that the democracy of health is not a concession from above, but a conquest that can start from the bottom, from associations and citizens, aware that the Res publica is still a good that belongs to the people. What is happening in Italy is in all respects a social movement. A new collective conscience that demands justice, prevention, timeliness . Because if there is a cure, letting a child die because of a missed diagnosis is a moral crime, before a health crime. Negligence, disinterest in the face of life that cries out to be lived. The Italy of slow laws is clashing with the Italy of families that no longer wait. And in this clash, every time a signature becomes law, every time a screening saves a newborn, everyone wins. And so perhaps, today more than ever, it is worth rewriting the fairy tales. Not "once upon a time", but "there will be a time when no child will be forgotten at birth". And it will be thanks to those who, looking at that pain, chose to act.
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