Burnaby boy chosen to represent BC Children's Hospital
North Burnaby's Lisa Piccolo was convinced that something wasn't quite right with her two-week-old baby boy, Luca.
His bowel movements didn't seem normal, he ate a lot but didn't seem to be thriving, he seemed to cry far more than other babies his age.
"We could almost see food go right through him," recalled his dad, Jim.
Luca was two years old before specialists at BC Children's Hospital saw him. He underwent a sweat test and the doctor asked his parents whether they'd ever seen grains of sweat crystallize on Luca's eyebrows.
They had. They later learned that's a sign that the body is losing an excessive amount of salt.
The doctors diagnosed him with cystic fibrosis (CF), a genetic disorder that mainly affects the lungs, pancreas, liver, and intestine.
Now 11, Luca is helping to give back to the hospital after he was named its 2012-2013 "champion child," an ambassador for the fundraising and awareness-raising efforts of the BC Children's Hospital Foundation.
In some ways, the new role is an extension of what the Piccolo family has been doing for years.
Lisa and Jim were grateful that Luca was diagnosed at an early age, the sooner to start treatments. With the diagnosis also came a complete change in their day-to-day lives.
Luca takes upwards of 40 pills a day to help his digestive system function properly. Up until age five, he endured daily physiotherapy that involved striking him on the back to loosen the mucus in his lungs.
That form of physio was replaced with a positive expiratory pressure (PEP) mask and, to the great relief of his parents, that was also the same year Luca was able to swallow pills on his own.
While the daily routine changed with the diagnosis, Jim said, "I don't think you ever get over it."
Lisa added, "Now I don't even know what it was like [before the diagnosis]. It's part of what we do."
When Luca started school, the family made a conscious decision to be as open as possible about his disease.
"I'm not the type of person who wants to hide it," said Lisa, who believes with greater awareness comes acceptance. Still, "the most difficult thing was to let him integrate and not keep him in a bubble so he wouldn't get sick."
The couple credit staff at the hospital for advising them to give Luca as normal a life as possible. He plays tennis, soccer and piano, with Jim noting that by keeping active, Luca helps keep his lungs clear.
But after a few years of Luca missing school for short hospital stays and having a teaching assistant on hand to help him with his medications, in Grade 2 the family decided to help answer the many questions his classmates had.
They gave a Powerpoint presentation to the school describing a typical day for Luca at the children's hospital CF clinic. They explained the disease and the importance of children staying home if they have a cold so as not to pass on bacterial infections to Luca.
Today, kids from the school still hold bake sales and sell lemonade, giving the money to the family to donate towards CF research.
One of the parents at the school happened to work for the children's hospital foundation, and after seeing the presentation, invited them to speak at functions for the organization.
Luca was actually asked to be the hospital's champion child a year earlier, but it was postponed when it was learned a champion child from another province also had CF—something they must avoid as CF patients are particularly susceptible to catching each other's bacterial infections.
As part of their tenure, the Canadian champion children will gather to meet each other in Ottawa, and in Orlando, Fla. they'll meet with other kids from the Children's Miracle Network from across North America.
"Luca has an incredible medical challenge, but he has such a positive energy and attitude that it's easy to overlook the fact that he has these medical issues to deal with," said Stephen Forgacs, director of communications for the BC Children’s Hospital Foundation.
"That positive attitude makes him so well suited to this role," Forgacs said, adding Luca will help to put a face to the hospital and the work it does.
For his part, Luca said he is "very honoured" to be named a champion child.
He doesn't tire of talking about his situation because "I want everyone to know about the disease so they can raise money for it."
He also wants to let everyone know "all the people at the [hospital's CF] clinic take very good care of me."
Then, as soon as the interview was over, his job done, Luca was back to being a regular kid, riding off on his bike with friends from the neighbourhood.