Liam McIntyre, 5, loves Spider Man and can鈥檛 help but wear a big smile on his face while bustling about.
These are typical characteristics of a five-year old, except for the fact that a disease constantly makes the action of breathing a difficult one for him.
It doesn鈥檛 show on Liam, however, and when asked how it feels, it takes a few moments for him to describe it.
鈥淚t hurts my tummy sometimes,鈥� he said, while acknowledging the heaviness he regularly feels on his chest as a result of mucus build-up in his lungs.
That build-up also affects his digestive systems. As he delivered his answer, he eyed a Spider-Man poster on a wall, slowly forgetting about his breathing.
鈥淗e hides it well,鈥� said Liam鈥檚 mother Kasey, who was accompanied by her husband Ken and their three-year-old daughter Abigail, in a visit to the Mercury office. The family lives just outside of Estevan.
鈥淗e probably thinks it鈥檚 normal,鈥� she said, adding specialists have often described the heavy breathing like breathing through a straw.
Liam was diagnosed with Cystic Fibrosis through newborn screening at four weeks old, not long after it was approved to test for CF by the government. He is the first child from 小蓝视频 Saskatchewan to be confirmed through that process. He鈥檚 also the only child in the province with the G551D mutation of the disease.
Liam is Kasey and Ken鈥檚 first child, and despite a long check list of tasks designed to keep their son healthy and safe, the two approach every day like a normal one.
鈥淚t was a new normal for us,鈥� Ken said, referring to the couple of weeks following Liam鈥檚 diagnosis and how the adjustments were made instantaneously.
鈥淭he clich茅 of 鈥榯ake one day at a time,鈥� is real,鈥� Kasey said.
鈥淭here really wasn鈥檛 a lot of adjusting that needed to be done because he was our first child and we were first-time parents,鈥� Ken added.
Every day when Liam eats, he must take one or two digestive enzymes called Creon 10. This intake can accumulate to 12 a day. He also takes one multivitamin and two drops of Vitamin D. If he is on an antibiotic that upsets his stomach, Kasey sometimes gives him probiotic drops. Liam is used to swallowing pills the same size adults do. Dehydration is something that is often prevalent with people who have CF, so Liam requires a daily dose of six glasses of water, juice or chocolate milk. His daily routine also includes two 30-minute sessions of physiotherapy.
鈥淲e do a lot of things together that other families do,鈥� Kasey said, after listing Liam鈥檚 daily regime.
Liam was quick to point out that going into the hot tub, however, was a big no-no. Kasey explained hot tubs often contain large amounts of bacteria, which can be dangerous for anyone with CF.
鈥淲e do the water slide instead,鈥� she said. 鈥淭here are always things we learn about what we can and can鈥檛 do.鈥�
Liam鈥檚 favourite part of school is when his kindergarten class gets to spend time on the computers. Recess, he added, is also a lot of fun.
Kasey said Liam鈥檚 current teacher is very 鈥渉ands-on,鈥� and often asks Kasey questions to ensure Liam is comfortable at school. She noted food intake is frequently her biggest concern, even at home, because he requires double the calories compared to other children his age.
鈥淒octors have said, even if he were to eat McDonalds every day, he wouldn鈥檛 gain weight,鈥� Kasey said. She stressed a healthy, high-carb diet, not McDonalds, is what Liam has.
At school, he has a snack at 10:30, lunch at noon, 2:30, then at home he has breakfast, supper and a bedtime snack.
鈥淭hat鈥檚 probably one of the hardest parts for me, because sometimes he won鈥檛 want to eat,鈥� Kasey said. 鈥淚 don鈥檛 want him to hate eating.鈥�
Abigail has become very independent, Kasey explained, and doesn鈥檛 understand why Liam gets a large amount of attention from her parents.
鈥淚 think I have to learn to include her a bit more,鈥� she said.
Abigail, like her brother, also loves Spider-Man.
鈥淲e pray that Abigail never loses her big brother,鈥� Kasey said.
Liam and his family are coping with his disease, but a new hope in the form of a drug has fueled new energy into the quest to rid Abigail鈥檚 brother of his condition.
His daily regime will change in a few months to accommodate a drug called Kayldeco, a prescription medicine breakthrough for people with CF that was approved in Saskatchewan on September 1, 2014.
Liam has met most of the criteria that allows someone to use Kalydeco, except for the age requirement. He must be six years old, and will turn that age in April, 2015.
Until then, the McIntyre family will continue to do what they have so far, and provide Liam with all the support possible. At the same time, Kasey and Ken said by putting a face to this disease, they hope they help others who know someone with CF.
鈥淲e want to pave the way for everyone else,鈥� Kasey said.
