Cassie’s life would turn upside down when her son Louis was diagnosed with Bile Duct Atresia at the tender age of 2 months. This condition causes bile to stay in the liver which can become fatal for someone like Louis before they turn a year old. The future seemed uncertain for Cassie and Louis because the progression of this disorder varied from person to person.
Cassie recalls seeing Louis’ skin complexion slowly turn yellow and when she took him to the doctor, they told her that it was infant jaundice and that it was very normal. Everything changed when Cassie took Louis for his regular vaccinations and an observant nurse advised them to get a further diagnosis. Cassie and Louis were then airlifted to Sainte Justine Hospital in Montreal, which is quite the distance from their hometown of Saguenay.
When they got to Sainte Justine Hospital, Louis had to get an emergency surgery done. Cassie and Louis ended up having to stay at the Ronald McDonald House for six months while Louis was given follow up treatment for his surgery. Louis developed other complications post surgery which meant he had to get two more minor surgeries to prevent cirrhosis of the liver and other issues like chronic malnutrition, vitamin malabsorption and cholangitis.
When the frequency of Louis’ follow-up treatments decreased to every three months, Cassie had no choice but to go back to Saguenay with Louis. Cassie still had to figure out how to keep bringing Louis back to Montreal from Saguenay which is over a six-hour drive. Driving was out of the question because Louis had to be given IV solutions from time to time and that would be complicated when traveling by road.
Cassie was luckily on maternity leave, which allowed her to be in constant care of Louis, but his father had to apply for a caregiver’s allowance which let him be close to his family during this time of duress. “It’s hard to separate a family when the child is suffering from an illness, it’s a whole other level of arrangements to be made”, says Cassie. The family also had a daughter to take care of which made the whole process a hassle.
Another huge challenge for the family was the financing of the trips to Montreal. “After the diagnosis, our friends raised almost $7,000 but Louis’ medication was not completely reimbursed, and we ended up spending more than $7,000 on that. We were unable to use the money we raised for his travel”, says Cassie on the difficulty she had in financing their trips to Montreal for treatment.
Cassie came across Hope Air when Louis was around 6 months old with the help of a flyer. “When I saw one of your flyers, I thought it would be so useful with all the travels we would have to take. I also suspected that we would have to regularly travel for treatment until he’s 18.”
Cassie notes that Hope Air was instrumental in helping them get Louis the treatment that he desperately needed to live a happy life. As the years went by, Louis kept getting better with treatment and through Hope Air’s help bridging the distance between home and hospital. Cassie’s nervousness turned to confidence with unwavering support from Goldie, a travel co-ordinator at Hope Air.
Cassie found inspiration in her son’s journey and decided to change her career path. She now runs a non-profit that helps children afflicted by the same disease that Louis had.