21st November 2025

In Turin, everything is ready for a charity evening to be held at the Teatro Grande Valdocco on Saturday 22 November at 8.30 pm, the result of a solidarity initiative bringing together Piedmont, Veneto and Emilia-Romagna, which will bring the musical ‘A piedi scalzi‘ (Barefoot), loosely based on ‘Forza venite gente’ (Come on, everyone) by the Aliestese theatre company of Vittorio Veneto, to the Piedmontese capital.

The purpose of the evening is to raise funds to support the dream of the small association Le ali di Camilla (Camilla’s Wings) to build a house near the Modena hospital to provide free accommodation for the many families of patients with epidermolysis bullosa (better known as ‘butterfly children’) who travel from all over Italy for visits and hospitalisation in Modena, a true international reference point for this condition.

Among them were several families from Piedmont.

Like that of Claudio Mantovani, from Moncalieri, who passed away in September and who initiated the organisation of the show that will be dedicated to him, carried on by the many friends who were close to him, including the director of the musical Alessandra Zandanel, also from Moncalieri, and the entire Aliestese staff, who coordinated the entire organisation of the evening.

Claudio was the first patient in the world to undergo a genetically corrected stem cell transplant in the early 2000s, thus demonstrating for the first time the feasibility of the gene therapy developed in Italy by Prof. Michele De Luca of the University of Modena and Reggio Emilia.

“Our relationship with Claudio has lasted for over twenty years, since well before Le ali di Camilla was founded,” said President Stefania Bettinelli.  “For us in Modena, and for the entire international community of researchers working in the field of epidermolysis bullosa, Claudio was never just a patient, but THE patient. The charity evening he strongly desired to contribute to the construction of Camilla’s house has a special meaning for us, because it has also become a way to remember him, through a show that he loved very much.“

Over the years, Claudio has made countless trips to the Emilian city for visits and hospital stays, with all the inconveniences that staying in a hotel far from home entails for someone with a rare, severely debilitating disease that requires special care. The Una casa per Camilla (A Home for Camilla) project was created precisely to limit these inconveniences, with the aim of building a home designed in every detail to meet the specific needs of ‘butterfly children’ of all ages, with home automation solutions to overcome architectural barriers and architectural solutions that encourage socialisation among the families staying there, who are thus able to transform the stress of visits into an opportunity for exchange and sharing.

“When we received the request to bring our musical to Turin to support this project, we immediately accepted with enthusiasm,” said Andrea Fiorot, President of the Aliestese Association. “We are not a professional company, but we like to work professionally, with the primary goal of giving before receiving, regardless of the theatre or the show.”

The dream, which has accompanied the association since its inception in 2019, has become a concrete project thanks to the help of many private individuals and third sector organisations. Since the laying of the foundation stone in February 2025, construction has never stopped, and now the external structure of the building is almost complete.

“There is still a lot of work to be done before we can welcome the first families,“ concludes Giulia Schenetti, vice-president of the association named after her little girl Camilla passed away in 2017 at just a few months old, “but we are deeply moved by the tremendous solidarity we are receiving. As parents, we know what it means to travel across Italy with a child so fragile that you hardly know how to touch her, having to adapt to treating her for hours in a hotel room and coming up with solutions to prepare soft foods that restaurants don’t normally provide.”

“The house will have a nursing station and a kitchen to prepare meals at any time to spare other families the hardships we experienced with Camilla and so that they can feel at home even when illness forces them to be away from their own homes,” adds Giulia’s husband and vice-president Christian Riccioni.