Thanks to you, my happy kid is lucky to be alive

Every weekday morning, a caravan of yellow school buses parade through our streets, filled with children staggering under their big backpacks. Our Stefano is one of those kids, but his bag isn’t full of books. Instead, it holds what keeps him alive: a portable respirator. Without it, he cannot breathe.

You may not know it, but you have been an important part of Stefano’s life. Thanks to you, my happy kid is lucky to be alive. Your generous support for specialized research and training at The Montreal Children's Hospital transformed Stefano’s future. It gave him back his childhood.

Our little guy suffers from Congenital Central Hypoventilation Syndrome, also known as “Ondine's Curse”. Trust me, it's not easy to hear the word “curse” in your child’s diagnosis at a mere few days old.

Because of this disease, Stefano was going to need medical help. A lot of it. First, he would need a tracheotomy and mechanical ventilation for the rest of his life. But it didn’t end there: Stefano also had Hirschsprung’s disease. We had never heard of it, but we learned that it prevents the nerve cells in the intestines from functioning. He needed surgery to remove his entire large intestine and was left with only one third of his small intestine. He had an ileostomy and needed to be fed through a feeding tube.

We spent more than a year in the Hospital; long months, caught in the whirlwind of this complex disease, trying at the same time to care for our little twin daughters separated from their brother. But thanks to you and the staff of the complex care service, we were finally able to bring Stefano home.

But while all we wanted was to go home, it was far from easy at the beginning…

We weren’t trained medical professionals. We were regular parents. We needed to get help with home care as well as the equipment Stefano needed. Rosa and I had to be taught how to take care of Stefano. And there you were, to the rescue again. Because of you, we were able to get the training and support that were crucial to keep going and help our little Stefano. And it didn’t stop there…

Between the ages of three and four, Stefano underwent operations to implant diaphragm stimulators to allow him to move without a ventilator. This gave him a lot more freedom and was a beacon of hope for our family.

But a year later, on Christmas Day, the unimaginable happened: as we were taking him to The Children’s because he couldn’t breathe, his heart stopped for 19 full seconds. Until then, we had no idea how long 19 seconds could be. You cannot imagine our relief when the specialists at The Children’s immediately took charge and implanted a pacemaker in our little boy. Another feat that you helped make possible to save Stefano.

We don't know what the future holds, and that's why ordinary moments are so precious to us. Seeing our three children get on the bus together may seem mundane, but when you think about everything Stefano had to endure to get to where he is today, these ordinary moments take on a whole new meaning. And whatever happens, Stefano wakes up every morning with a big smile.

We owe these privileged moments to you. With each passing day, each passing month, each passing year, Stefano has beaten the odds, and he has done so with your help.

Every day, we’re delighted to be able to count on the ultra-specialized care at The Children’s that your donations support. It’s caring and generous people like you who help children like Stefano fight and do what children do best: be regular kids.

Your donations are precious. They restore hope. They give back life. Thank you for giving generously and for helping Stefano and other children benefit from the excellent care provided at The Montreal Children's Hospital and helping them regain their boundless energy.

Thank you from the bottom of our hearts.
Vito and Rosa, Stefano’s parents