'He is a superhero:' Four-year-old full of life despite daily struggle for air
Michelle Dube, CTV News Toronto
Published Friday, May 24, 2019 8:50PM EDT
Last Updated Monday, May 27, 2019 1:00PM EDT
When Milton-resident Deana Wilson took her newborn son Liam for a routine checkup back in 2015, she had no idea her son was struggling.
“My doctor actually realized that there was something going on with him. He was breathing really quickly,” Wilson told CTV News Toronto.
After several weeks in hospital, the doctor called with a diagnosis – Cystic Fibrosis. The incurable genetic disease mainly affects the lugs and digestive system.
“I was devastated, didn’t know what was going on. I had never heard of it,” said Wilson. “We didn’t even know that we were carriers.”
Breathing a struggle for Liam
Over the past four years the family has learned to go about their day with an abundance of caution. They do the best they can to limit the risk of infection. Breathing is a daily struggle as it is.
“If you plug your nose and breathe through a straw, that’s what it’s like,” his mother said. “Liam’s nasal passages are really tiny and are always congested.”
Liam has to wear an oxygen mask at times and takes enzymes with every meal to break down his food. Now four years old, Liam loves to run and ride his scooter, but his activity is limited. His mother says the hot air in the summer and cool air in the winter can spell trouble. She’s also not sure about sending him to Junior Kindergarten this fall, because of the increased exposure to germs.
But Liam told CTV News Toronto that he hopes his mom will reconsider.
“My teacher, she’s showing me all the stuff of the school,” he said.
Wilson says her son is a superhero
Despite the challenges, Liam faces each day with an infectious smile.
“He goes through the whole daily regime with a smile on his face and thinks nothing of it,” Wilson said.
Wilson, who works from home in real estate, said she is inspired by Liam. She’s devoted her free time to raising awareness about Cystic Fibrosis. On June 15, Wilson will be hosting 700 kids and parents at the Milton Banquet and Conference Centre in support of SickKids Hospital. Kids are invited to dress up as their favourite superhero and take part in a photo shoot to showcase their inner strength.
The fundraiser is called ‘SuperStarrs 2 SuperHeroes.’
Wilson, along with Liam, will also be joining fellow parents and supporters this Sunday, May 26 at the ‘Walk To Make Cystic Fibrosis History’ in Milton.
Wilson wants nothing but a long happy life for Liam.
“I want to raise as much awareness and money and everything else we possibly can.”
May is ‘Cystic Fibrosis Awareness Month’
According to Cystic Fibrosis Canada, “CF is the most common fatal genetic disease affecting Canadian children and young adults.” At this point it is incurable, affecting an estimated one in every 3,600 children born in Canada.