Liam was born on Valentines day in 2015 at Milton District Hospital via Emergency C-Section.
Liam was diagnosed at 3 weeks of age with Cystic Fibrosis through the newborn screening; Liam is now called by many “Milton’s Little Superhero” I knew though right from the very beginning he was Special!
My family doctor had noticed Liam’s breathing was rapid and he had also lost some weight. At the Oakville Hospital Liam was poked and prodded for weeks with no real diagnosis. They finally released us weeks later because he was gaining the weight again and they couldn’t find anything wrong. The same day we were released we got that phone call that no parent should have to get…. My doctor and the pediatrician called saying that they found out Liam has CF we were in complete and total shock, devastation and utter disbelief. I was told not to look into it on the computer, but of course that’s the first thing you do….my heart just sank. I had no idea I was a carrier. We were then told we had a specialist apt the following day in Hamilton at McMaster. This is where we met all his amazing team members. We were met by Dr. Pedder and Val, who walked us through our next steps which was the sweat test and blood work to confirm the diagnosis. His first sweat test came back in conclusive which meant we had to come back and do another one the following week, but the blood work confirmed he was positive for it. We were shown everything all in ONE day because I told them I could handle it, so we spent the whole day learning from how many enzymes he needed per meal, to his physio care, to the nebulizer and his inhaled medications, it was a lot to take in, but I knew it had to be done and I had the amazing support of my family to help Liam thrive!
So right from his diagnosis I knew had to make a difference, so we armed ourselves with information and set out on a mission! We had a little cry but wiped those tears quickly and we got to work I knew I wanted to make a difference and raise awareness for CF and that’s exactly what has happened!!
Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.
CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.
Typical complications caused by cystic fibrosis are:
It is estimated that one in every 3,600 children born in Canada has CF. More than 4,300 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.
Cystic fibrosis is a genetic disease that occurs when a child inherits two abnormal genes, one from each parent. Approximately, one in 25 Canadians carry an abnormal version of the gene responsible for cystic fibrosis. Carriers do not have cystic fibrosis, nor do they exhibit any of the symptoms of the disease.
When two parents who are carriers have a child, there is a 25 percent chance that the child will be born with cystic fibrosis; there is also a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will neither be a carrier nor have cystic fibrosis.
Cystic fibrosis is a multi-system disorder that produces a variety of symptoms including:
If a doctor suspects a patient has CF, a ‘sweat test’ may be administered. This test measures the amount of salt content present in the sweat. If the test comes back positive, it means the sweat collected contains more salt than usual and supports a diagnosis of CF. Genetic testing, prenatal and newborn screening for CF are other methods of determining the presence of CF.