He wasn't even expected to live more than few days, but Emilio Razzano is about to reach his first birthday - and he's not looking back.
Several weeks before his birth on May 1, 2003, little Emilio Razzano was diagnosed with a hypoplastic left-heart which required immediate open-heart surgery. Since his first surgery three weeks after his birth, Emilio has undergone a countless number of medical procedures, doctor's appointments and emergency hospital visits. He has been close to death on several occasions but time and time again he has displayed an amazing amount of courage and physical strength, and has become somewhat of a medical celebrity.
"When the doctors see him they hug him and kiss him," said Emilio's mother Pam Razzano. "They're very surprised and quite thrilled to see how far he's come and how well he's doing."
I had an opportunity to visit with the Razzano family on Wednesday (April 28) and can report that he's doing quite well indeed. Aside from a small tube that runs into the side of his mouth so he can become properly nourished, Emilio looks just like any other one-year-old baby boy. He greeted me with a huge smile and proceeded to crawl around on the living room floor, flipping through the pages of books and playing with toys.
His mother proudly showed the scars from his multiple surgeries while explaining the numerous details of his medical history.
Although he's in good condition now, Emilio still has a long, hard road ahead of him.
"We live every day like today might be our last day," Pam explains. "Even if we can't afford it or it's not on our agenda we're going to do it. We don't know if he's going to make his next surgery so we're just thankful for every single day that he's with us. We don't want to have any regrets."
The Razzanos recently discovered that because of the amount of antibiotics needed to combat the constant threat of infection, their pride and joy now suffers from severe hearing loss.
"His body isn't strong enough to fight off infection so he has to have antibiotics."
He also has continual problems with his kidney and liver, and must receive painful monthly vaccinations to prevent him from contracting a respiratory infection known as Respiratory Syncytial Virus (RSV).
To add to the list of medical illnesses, Emilio also has a colostomy and a hernia which the family hopes can be cured with yet another upcoming surgery scheduled for June.
"It's so important for him to stay healthy," said Pam, "because if anything happens he won't be able to be operated on."
As a result, the Razzanos have become extremely cautious about germs entering the household. Anyone who comes by for a visit must wash their hands thoroughly.
"I guess my overprotectiveness has helped our family," said Pam.
Pam also worries about the impact that the past year has had on her eldest son Marcus. He doesn't attend day care or preschool like any other four-year-old would because of the risk of carrying germs and contracting other common sicknesses that could be passed onto his little brother. He does know, however, that his little brother is special and he's happy to have someone to play with.
"He likes to watch me jump on the bed and when I fall down he giggles," said Marcus. "He's cool because I like playing with him and he knows I love him. He's really brave too for getting all those needles. I hope he gets a good night's sleep."
Marcus and the Razzano family must now learn sign language and have learned to adapt to the many constant and sudden changes in Emilio's health.
Trauma has been a regular occurrence in the Razzano family. He's been airlifted by air ambulance three times, rushed to emergency twice in an ambulance, had more than 30 specialty doctor's appointments and has stayed overnight at B.C. Children's Hospital 136 times - more than a third of his life.
In December, Emilio stopped breathing when he choked on his own saliva due to the fact that he has only one vocal chord, and a month later he contracted the Norwalk Virus, a severe flu-like infection which closed down the entire Squamish General Hospital.
Since first learning of Emilio's plight, the community has rallied around the Razzano family, raising thousands of dollars to help with the costly expenses of travel and medical bills - an act which is much appreciated by the Razzanos.
"Everybody has been really supportive," said Pam. "Shanda [Dosanjh] has been really great helping to raise a lot of money. It's amazing how expenses can accumulate."
But financial challenges are the least of their worries. Pam and her husband Enzo nearly lost their baby following his third surgery in October. The doctors told them that they would be surprised if he made it through the night. A priest came to visit the family and they said many prayers, but it just wasn't his time to go.
"I'm a strong believer that if God wanted him, he would take him - but I guess he was meant to be with us."