The Stefano Vito Ruvo (SVR) Foundation raises money for the Complex Care Services at the Montreal Children’s Hospital. It raises money for all the children, but it all started with one special kid, Stefano Vito Ruvo. On December 1st, 2009, this little bundle of joy was born, but with a few complications.
Stefano was born with Congenital Central Hypoventilation Syndrome (CCHS), a condition where his brain forgets to remind his lungs to breathe. Stefano would therefore need a tracheotomy and a respirator to help him breathe.
Stefano was also diagnosed with an associated condition, Hirschsprung’s disease, so doctors had to remove his large intestine and part of his small intestine. Stefano then had an ileostomy, which connects his small intestine to an opening in the skin. Read more about his and his family’s struggle from birth until 2015 here.
A lot has happened to Stefano over the past year. The 6 (soon to be 7) year old has gone through so much, but it hasn’t taken away his spirit.
On December 24th, Stefano’s parents brought him to the hospital because he was having trouble breathing and his ventilator wasn’t giving him enough support. That night he was sent home, but on Christmas morning, he wasn’t getting better, so they brought him back.
Stefano’s dad, Vito Ruvo, recalls that morning in the pediatric intensive care unit as a terrifying experience. Stefano was fine one minute, and then the next his eyes rolled back and his head fell to the side. His heart had stopped. Doctors confirmed that it had stopped for a full 19 seconds. Vito claims it all happened so quickly, he thought only a few seconds had passed.
Stefano was revived with no damage or loss of oxygen to the brain, thankfully. But this created a new problem. What if this happened again? Doctors decided he needed a pacemaker in his heart. But where to put it? He already had his ileostamy bag, a central line catheter, and his diaphragm pacers. That’s a lot of equipment to put in such a tiny body.
Stefano and his family waited at the hospital for 4 weeks until they finally performed the operation and placed the pacer below his heart. But during his month-long stint at the hospital, Stefano seemed to be having a great time. He even got engaged!
The respirator nurse came in to see him one day and after having asked her for her name, he promptly asked “Will you marry me?” We can’t imagine the heartthrob he will be when he grows up!
His next challenge would be the pre-planned surgery to remove his ileostamy bag on April 11th. His medical team thought the time was right to reconnect the remaining part of his small intestine to the rectum. Dr. Emil was very positive that the time was right, saying “Stefano has always overcome each obstacle and this should be no different.”
His classmates and teachers were very supportive. During his hospital stay, teachers came to visit him, and the principal and secretaries even FaceTimed him.
After the surgery, he didn’t go back to school for a few weeks. Imagine having to learn to go potty at the age of 6! It wasn’t going to be easy. But Stefano was a quick learner, and he graduated to pull-ups quickly, and was able to go back to school 3 weeks after his surgery.
And now? He’s a big boy now, in undies! Rosa and Vito Ruvo did an excellent job teaching their son with lots of support and encouragement.
His year hasn’t been all surgeries and potty training, though. He got pretty close to PK Subban on numerous occasions, with PK calling him “the man of the hour” as Stefano ran to give him a bear hug.
He’s made plenty of friends with the staff members of the hospital. He gets attached to each and every one of them, and welcomes them into his family, in which they’re happy to be a part of.
Stefano is quickly growing up and learning tips and tricks from his two older twin sisters. “There’s the good and the bad with him having older siblings. He picks up a lot of stuff,” says Vito with a sigh, as Stefano climbs the counters behind him.
Vito claims that the next challenge to overcome will be his TPN. He still receives his TPN via his Piccline, 7 days a week, to ensure that he gets enough nutrition, to compensate for foods his digestive system cannot yet handle. As he gets older, he will likely be able to take care of his needs during the day without a nurse, but he’ll still need a nurse to watch over him at night.
But Stefano has his own plans for the future. When asked what he wanted to be when he grew up, he said “A daddy – just like my daddy.” But what about a job? “I want to wear a suit to work. I want to work at the bank. I’m going to be a boss. A boss daddy,” he exclaimed, as we all laughed.
His biggest dream, he says, is to “block my nose and go underwater.” Baby steps, Stefano! But we believe in you!
Through all of his challenges, Stefano has kept his positive outlook. He is probably one of the happiest kids we have had the honour to meet. He is constantly making us smile and laugh, and we hope that you all get a chance to meet him.
To see this bundle of laughs in the flesh, join us at the SVR Children’s Foundation A Night at the Museum on Friday, September 16th at Musée Grévin. Find out all about this fabulous soirée here. Buy your tickets here. If you would like to make a donation, click here.
We hope to see you on Friday! We’ll be there, and so will Stefano!
Photos by Ver Sepasi (@versepasi).