Give hope to families like Stefano's

Stefano was born with Congenital Central Hypoventilation Syndrome also known as Ondine’s Curse. “It’s not an easy thing to hear the word “curse” in your child’s diagnosis at a mere few days old,” says his dad, Vito. And to learn he would need a tracheostomy and mechanical ventilation for the rest of his life. And there was more; Stefano was also diagnosed with Hirschsprung’s and the nerve cells in the intestines don’t work. He has 1/3 of his small intestine.

By 6 weeks old he had an ileostomy, a tracheostomy, a central line catheter and a feeding tube… “We spent over a year at the hospital while also trying to be there for our twin daughters. The time came when we could think about Stefano finally coming home. It wasn’t easy at first… We had to get nursing care, get the equipment he needed, and we needed to learn how to properly care for Stefano.”

In 2013 and in 2014, Stefano had operations to implant diaphragmatic pacers so he could walk around without a ventilator. He wears a back pack that holds the machine that keeps him alive. This gave him extraordinary autonomy.

Then on a Christmas day, they had to rush to the Children’s because Stefano couldn’t breathe well. And that’s when the unimaginable happened: his heart stopped beating for 19 seconds. The Children’s specialists took matters into their hands and installed a pacemaker in their little boy.

Stefano had a fifth major operation in the spring of 2016. The doctors reconnected his intestine to his rectum. “When school started, of all the preoccupations our boy has, worrying about being able to control his bowel movements was at the top of his list, as he was just learning to go to the bathroom at age 6. But he is a brave little boy and we knew he could take on this new challenge.”

We don’t know what the future holds...
Watching all three of their children step onto the school bus together might seem like no big deal, but when you think about what Stefano and his family had to go through to get to this point, it’s something special. And no matter what, Stefano wakes up with a smile each day.

“Not a day goes by without thinking of how privileged we are to be able to count on the Children’s state-of-the-art care. And also on thoughtful generous people who give to its Foundation to help children like our son thrive and do what kids do best: be kids.”

Please give generously and help Stefano and other kids benefit from the excellent care at the Montreal Children’s Hospital.

https://www.youtube.com/watch?v=A3Ua0Lvxfv8