May is Cystic Fibrosis Awareness Month
Read along as Laura describes her experiences with raising two children with Cystic Fibrosis.
May is Cystic Fibrosis Awareness Month.
Cystic Fibrosis also known as CF is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure.
CF causes various effects on the body, but mainly affects the digestive system and lungs. 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.
Life with Cystic Fibrosis
CF is a multi-system disorder that produces a variety of symptoms including but not limited to - persistent cough with productive thick mucous, wheezing and shortness of breath, frequent chest infection which may lead to pneumonia, bowel disturbances, weight loss or failure to gain weight, salty tasting sweat and infertility (men) and decreased fertility (women).
Doctor's visits are all too common
A little bit about our story that lead us to join in on advocating for Cystic Fibrosis:
When our son Maddox was born in June of 2009, he struggled with weight gain – he weighed in at only 12lbs at 6 months old. We were back and forth to breastfeeding clinics, pediatricians, dietitians and nutritionists. In January of 2010 when Maddox was 7 months old, we brought him to the hospital to conduct a Sweat Test. As young parents, we didn’t know what a sweat test was, but we were willing to do everything possible to figure out why our baby boy wasn’t gaining weight. We got a call on a Friday from the pediatrician, giving us the results of this Sweat Test – ‘Maddox tested positive for Cystic Fibrosis’. Our lives changed in that instance. We did everything possible to learn about this disease. We spent the entire week after the diagnosis in a hospital room talking to the entire CF team (pediatrician, nurses, dietitian, physiotherapist and social worker). We were well educated and equipped with all the necessary tools we required to keep our child as healthy as possible.
In October of 2013, we welcomed our second baby, Lilly. I knew at first site she had Cystic Fibrosis. Although she wasn’t diagnosed until 3 weeks old, we already had ourselves prepared to accept the news and to face whatever challenges came our way.
Maddox & Lilly, although they don’t fully understand the severity of their disease both know there is a daily routine that has to be followed in order for them to stay healthy and ‘out of the hospital’ - they cannot begin eating without taking their enzymes first (3-5 pills/meal & 2-3 pills/snack). They start and finish their days with nebulizers and chest physio. Nebulizers and chest physio are increased if they are sick, they take daily vitamins as their body does not absorb enough on its own, they use nasal sprays to keep nasal passages clear. On top of the treatments, Maddox & Lilly both conduct pulmonary function tests to determine their percentage of lung compacity. They also do routine bloodwork, x/rays & bone density scans.
Living in Fort McMurray, the population of people with Cystic Fibrosis does not warrant our city to have a Cystic Fibrosis clinic. Therefore, we must travel the highway over 400kms to the Stollery Children’s Hospital in Edmonton where we visit the whole CF team of pediatricians, nurses, physiotherapist, dieticians and social workers every 3 months. When our children get any sort of flu like symptoms we travel more often.
Cystic Fibrosis plays a huge factor in every aspect of our lives. Our children cannot be within 9 feet of another person with CF due to harmful bacterial infections that can be transferred from one CF person to the next. We educate our school staff, family, friends, coworkers, etc. on the disease and how they can help with keeping our kids healthy.
Keeping germs at bay
Maddox is 9 years old, in grade 4 and currently holds a black stripe in taekwondo, plays hockey, baseball & basketball. He enjoys camping, fishing, golfing, swimming, riding his quad and public speaking.
Just a kid doing kid things! Kicking butt and taking names!
Lilly is 5 years old and currently holds a green stipe in taekwondo, plays hockey, baseball & gymnastics. She also enjoys camping, fishing, golfing, swimming, riding her quad and dancing. Physical activity is a number one contributor to keeping kids with CF healthy.
She's a fighter in many ways!
Maddox and Lilly both advocate for Cystic Fibrosis by presenting to each and every class in their elementary school and educating their classmates and teachers on this disease and the different medications they take daily. They have no fear of educating anyone about their disease or ‘why they take so many pills?’.
We have many precautions in place, but we do not let this slow us down. What seems like countless hours every day with chest physio, nebulizers, puffers, enzymes, vitamins, nasal sprays, etc., we wouldn’t know a world without CF.
We do not let Cystic Fibrosis define us, we define CF. One day CF will stand for Cure Found!
The Oakes Cystic Fi-Bro&Sis Team