An inspiring family.

“Most people that visit us for the first time find the whole experience daunting,” says Michèle Rizzuto at the start of our visit. With seeming effortlessness, she lifts her son out of the bed and into the wheelchair. Fiorello can barely move on his own. He’s fed through a gastric tube. A LUISA ventilator takes care of his breathing. Only his eyes follow us closely throughout the entire conversation. Michèle Rizzuto is not daunted by everyday life or having to look after Fiorello. Quite the contrary. A sense of joy dominates the mood in the Rizzuto household.

Fiorello was just four weeks old when the pediatrician performed one of the first checkups and found that Fiorello couldn’t move his legs properly, recounts Michèle Rizzuto. On Christmas Eve, just a month later, he had his first respiratory arrest, face down on his mother’s breast. “Go home, enjoy life,” the doctors told her and her husband once they ascertained that Fiorello had type 1 spinal muscular atrophy (SMA). Fiorello will be lucky to reach his second birthday, was their prognosis. Type 1 SMA is, in fact, the most serious form of spinal muscular atrophy. It starts in early infancy and tends to cause death before the second year of life if untreated. SMA is a congenital, neurological disorder characterized by severe muscular weakness and atrophy. It is caused by the death of spinal cord neurons that control the muscles.

« For me, it was clear from the outset that we were going to do everything to help this family «

‒ Erich Reithaar, Managing Director of the Swiss subsidiary

For Fiorello’s parents, giving up was not an option they considered. “As long as Fiorello tolerates therapy and has no pain, we will do everything we can,” says Michèle Rizzuto. Michèle and her husband looked into the subject of ventilation. At eight months, Fiorello was ventilated overnight for the first time. Thanks to untiring research, trying out various devices, and through a variety of connections, the Rizzuto family found its way to Löwenstein Medical Switzerland. “For me, it was clear from the outset that we were going to do everything to help this family,” explains Erich Reithaar, Managing Director of the Swiss subsidiary. And now, that’s where Fiorello gets ventilators, accessories and consumables. Their cooperation has been straightforward, approachable, and wonderfully friendly, says Michèle Rizzuto, “Before I had around 15 different suppliers, that number has meanwhile dropped substantially.”

The last few years have turned Michèle Rizzuto into a virtual specialist in ventilation. She expertly monitors her son’s oxygen saturation and pulse. The pulse tells her whether Fiorello has to exert himself a lot when breathing. A few months ago, Fiorello switched from the VENTIlogic LS to the LUISA.

Michèle Rizzuto is impressed: “The runtime of the external batteries is simply great. That makes things a lot easier for us.” The better the batteries, the easier it is for us to plan the time when we don’t have access to a power socket, whether that’s going shopping or up on the Jungfraujoch, the Top of Europe. The family tries whatever they can to get Fiorello out of bed, the house, and into the outdoors to experience life. The family’s vehicle, a small van, was converted to accommodate a wheelchair. That way we can also go on holiday easily. “There’s nothing stopping us,” says Michèle Rizzuto. The next project involves fitting out the vehicle with roof-mounted solar panels to ensure an uninterrupted power supply for the ventilators and more independence.

What she’d also like to see is for people to approach Fiorello more openly. Many people tend to have major inhibitions, even avoid Fiorello altogether – it’s almost impossible for him to have contact with children of his own age. For that reason, “Brazil”, a service dog, recently joined the family. The black Labrador greets us with a friendly welcome as we arrive and doesn’t leave Fiorello’s side throughout the entire conversation.

He receives regular home schooling and communicates with his environment via a computer that he controls with his eyes. But his mother understands him even without the technical aids – for instance what TV programs should be on in the evening. “Die Beatrice Egli-Show”, for instance, has become a must recently, Michèle Rizzuto explains laughing, “We found it boring, but he liked it.” It’s these small, beautiful everyday moments that she wouldn’t really appreciate, she says, without Fiorello. Thanks to him she’s become aware of what it means to live for the moment, to enjoy the moment. “He’s the best thing that could have happened to us.”