Little Ayeda has landed at Palermo’s “Falcone e Borsellino” airport. She is two years old and affected by Progressive Familial Intrahepatic Cholestasis type 1 (PFIC1), a rare and very severe genetic liver disease. We at NOVE were there together with PFIC Italia Network ODV to welcome her, and with great emotion we finally saw the dream of bringing her to safety come true.

Her story is a race against time that began in June, when her mother, a refugee in Iran with the family, contacted Francesca Lombardozzi, president of PFIC Italia Network, via social media. In Iran Ayeda’s condition was worsening, adequate treatments were not available, and the family’s visa was about to expire. Forced repatriation to Afghanistan would have meant certain death for the child, due to the absence of specific medical care.

Collaborating means guaranteeing the right to healthcare even to children born on the wrong side of the world. This story shows that when associations, institutions, and media choose to listen and act together, professionalism, solidarity, and human commitment can truly change the destiny of the most fragile.

– Francesca Lombardozzi, President of PFIC Italia Network

From there, a chain of support was activated: the Observatory for Rare Diseases (Omar) released an official statement, the national news agency Dire, with journalist Alessandra Fabbretti, gave wide coverage to the case, and we at NOVE decided to support PFIC Italia in finding an emergency solution.

Crucial was the involvement of ISMETT – the Mediterranean Institute for Transplantation and Highly Specialized Therapies, which immediately guaranteed the child’s admission. The medical team made its outstanding expertise available, opening for Ayeda a path of diagnosis, advanced treatments, and the prospect of a transplant.

The process was not linear: in the middle of it all, the Israeli bombing in Iran and the subsequent communication blackout with the Italian Embassy risked stopping everything. It was then that the role of the President of the Sicilian Region, Renato Schifani, proved decisive. Through direct contact with the Italian Ambassador in Iran, he secured the release of the essential medical visa for the transfer, while also guaranteeing the family’s reception in Sicily with logistical and financial support that will allow them to stay in Palermo throughout the treatment process.

It was impossible to hold back the emotion upon her arrival at the airport. In our work we often come into contact with the suffering of women and children, but one never truly gets used to it. Then there are days like this one, when life surprises you with the strength of joy. Seeing Ayeda step off the plane meant witnessing something simple yet immense: the possibility, for a two-year-old child, to begin living the life every child should have. Not a privilege, but an absolute right.

– Arianna Briganti, Vice President of NOVE Caring Humans

The President of the Sicilian Region, Schifani, emphasized that:

in the face of the cry for help from little Ayeda and her family, Sicily did not look away. An extraordinary humanitarian mobilization was born, united by a single goal: to save a life.

Thanks to this teamwork, associations, institutions, doctors, and media standing side by side, Ayeda is now in Palermo, ready to begin a treatment journey that restores her chance to live.