“Passi da Elefante”: the story of Filippo and a family that chose to support research into SMARD1

There are stories that are born from a difficult moment but manage to transform into something great. This is the case for Teresa and Edoardo, a young couple who, following the diagnosis of little Filippo, decided to build something that could help not only their own child but also other families living with a rare disease.

We met them during a video call, joined by Filippo and their beautiful cats, as they shared the journey that led them to establish “Passi da Elefante” (Elephant Steps), the association through which they now support research into SMARD1 (Spinal Muscular Atrophy with Respiratory Distress type 1).

It all began when Filippo was just a few weeks old. Something started to worry his parents: «He wasn’t gaining weight and his breathing was labored» Teresa recalled. At first, it seemed like it could be a feeding issue, but as the days went by, check-ups became increasingly frequent, eventually leading to his admission to the Meyer Children’s Hospital in Florence.

From that point on, the investigations began: tests, hypotheses, waiting. Then came the diagnosis: SMARD1, a very rare infantile neurodegenerative disease that causes muscle weakness and severe respiratory difficulties within the first few months of life.

«When you hear certain words spoken, the world stands still» they said. Yet, right in the midst of such a difficult moment, Teresa and Edoardo chose not to give up. They sought out information, studied, and tried to understand how to transform their fear into something concrete.

Teresa, who had studied biotechnology and worked in research, immediately began reading scientific papers and in-depth articles about the disease. Day after day, by piecing together symptoms and information, she even managed to anticipate the diagnosis before the doctors’ final confirmation. «I needed to understand» she explained.

This is how they came into contact with our “Centro Dino Ferrari” at the University of Milan – Policlinico Hospital, where the research group coordinated by Prof. Stefania Corti carries out studies dedicated to SMARD1, including gene therapy projects and new therapeutic strategies for rare neuromuscular diseases.

As happens to many families living with a rare disease, their daily routine changed profoundly. Teresa decided to dedicate herself entirely to Filippo and the management of his care. However, without abandoning her creativity, she transformed her passion for drawing into a small personal project: today she creates illustrations and customizations for clothing and accessories through her brand “Quattordici” (Fourteen), which was born precisely during this journey.

But something else was also born from this story. Teresa, who has always been passionate about art and drawing, had crafted a small blue elephant for Filippo’s nursery during her pregnancy. That very same little elephant reappeared almost by chance during his stay at the Meyer Hospital, instantly becoming a special symbol for the family. Shortly after, the NIV arrived—the mask that helps Filippo breathe better. To their eyes, that long thin tube looked just like a little trunk. «That’s how he became our little elephant» they shared with a smile. “Passi da Elefante” thus became the name chosen for the association, symbolizing the desire to support scientific research and help it make important, strong, and determined steps, just like those of an elephant.

Today, the entire community of Prato is already rallying around the association. Even before the official launch, people have begun mobilizing through fundraisers, solidarity events, and initiatives dedicated to research. The next appointment will be on May 27th at 6:00 PM, at the Sala polivalente della Misericordia in Prato, where the official presentation of the association will take place.

A moment open to the city to share Filippo’s story, talk about SMARD1, and continue making, together, important “Elephant Steps” alongside research.