"I've been here for a month now, beside my son after surgery at a hospital in the north. I sleep with him, eat with him, watch him practice every day. And I think that here—only here—I could stay another month or two, or as long as it takes."
Loredana is the mother of Francesco, who is eight years old. Since Francesco was nine months old—since he was diagnosed with spastic tetraparesis—he has attended the rehabilitation center "La Nostra Famiglia" in Ostuni, in the province of Brindisi. It is one of four regional facilities of the institution founded in the 1950s by don Luigi Monza.
Ostuni is one of Puglia's most beautiful towns, perched on a hill but minutes from the sea, whitewashed stone outside, vibrant with art and tourists within. But for Loredana and Francesco and hundreds of families from the south, Ostuni means one thing above all: "La Nostra Famiglia"—the only place in southern Italy offering neurological rehabilitation for children from birth to age eighteen. "La Nostra Famiglia" is an ecclesiastical entity recognized since 1958, a nonprofit by law, with an operational arm: the research institute "Eugenio Medea," which operates at four sites. The main center is in Bosisio Parini, near Como; there is a facility in San Vito al Tagliamento in Friuli; another in Conegliano in the Veneto; and Ostuni.
The Puglia facility has been a research center since 1998. In recent months, the regional hospital reorganization plan assigned it twenty beds divided into two wards. The first ward provides neuromotor rehabilitation for cerebral palsy, head trauma, muscular dystrophy, epilepsy syndromes, and post-surgical orthopedic treatment—like Francesco's case. He had tendon surgery in Dolo, near Venice. (La Nostra Famiglia does not perform surgery.) The second ward handles neuropsychiatric disorders: intellectual disability, hyperactivity, speech and learning delays, and especially autism. "In treating autism," the medical director Antonio Trabacca tells us, "we start with the TEACH method, but we try to embed it in a broader approach we call Spazio verde—Green Space. We try to involve the family, schools, even the person's friends in a conversation about care, so we build around them an environment suited to their development."
Loredana and Francesco came very close to having no bed at Ostuni after the boy's surgery. They might have had to go far away—perhaps to Genoa or hospitals near Brindisi where they live, but certainly less equipped. Here is the weak point: the number of beds the region assigns to La Nostra Famiglia in Ostuni. Twenty beds seem few against the requests coming from across the South—Sicily to Campania to Molise—and against the overall cost of running the place. Family doctors and specialists usually direct patients to Ostuni's rehabilitation hospital and the centers in northern Italy. But it is simple to get in touch with the research centers; you can start at www.emedea.it. You stay in La Nostra Famiglia hospitals like any other public hospital: completely free. The rooms are doubles, to hold the patient and a parent, or singles for special cases.
A visit to the new wards shows at once that attention to the patient is strong here in material things: hygiene, quality of care, upkeep of the space. But it goes further. "Good done for its own sake—that was the motto of our founder, don Luigi Monza, who may soon be beatified by the Pope," says Carmen Chiaramonte, the center's director. "So we have a duty to give something more: not just to bodies, but to hearts." The mothers have kitchens and common rooms among themselves and with their children. It recreates something like a family environment, helped also by volunteers whose job is to play with the children. Perhaps this is why Loredana accepts spending a month, two months, three months in the hospital beside Francesco, leaving at home her thirteen-year-old daughter and her husband. For a time—a short time, they hope—La Nostra Famiglia becomes their family.
Vito Giannulo, 2004
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