When I was about 18 weeks pregnant with my youngest son Matthew, who is now 10, an ultrasound showed my baby had an echogenic bowel. After further ultrasounds and genetic testing, I was advised that he most likely had cystic fibrosis, and shortly after Matthew was born, we had blood tests to confirm.
I remember when the doctor walked into the NICU at SickKids and said they needed to speak with me. My mother and I were escorted to a small room where several other specialists were waiting. They advised me that Matthew had cystic fibrosis and sat and waited for a reaction. I remember the first words out of my mouth were:
"Ok, now what do we need to do?"
My husband and I decided that we would do everything to make sure he had a long, healthy life. We would advocate, we would raise funds and we would make sure he had access to everything he needed.
We tried not to Google or read too much into what cystic fibrosis was because we knew every child was different. Before Matthew was even born, we were connected with the SickKids cystic fibrosis clinic, and they walked us through what to expect and directed us to helpful resources. We knew medications and treatments could be costly, but we both had health insurance that we hoped would help.
We also knew that the early diagnosis meant we could give Matthew the care he needs right from the start, we committed to twice-daily treatments and ensured Matthew got all his medication, vitamins and the fatty/salty diet he needed to thrive. Now as a family, we constantly weigh the risk and rewards before travelling or participating in large events because Matthew could get sick easily and it would take him longer to fight an infection.
There have been many moments over the last nine years that I know wouldn't have happened if Matthew didn't have cystic fibrosis. His first challenges were within his first six months due to complications from a surgery he had at birth and the six weeks he was an inpatient at SickKids. The challenges helped us build strong relationships with his healthcare professionals, and they have only strengthened since.
One of the happiest moments to date was the call I got from SickKids on February 2017 - Matthew was one of two people approved for a CFTR modulator study. He was four-and-a-half years old and would be starting a CFTR modulator on Valentine’s Day. I truly felt this was meant to be and would help Matthew stay healthy until a cure was found! Matthew is still on the drug, and it has helped slow down the progression of his cystic fibrosis.
Since his birth, our family has rallied behind him to fundraise and raise awareness. Over the last 9+ years, we have run successful events like our family golf tournament, Mulligans Fore Matthew, and a Halloween Haunted House which have raised over $210,000 for Cystic Fibrosis Canada. I've spoken at several events and am part of the Peel District Chapter where I assist with their Facebook marketing. Matthew has also taken part in many clinical trials for SickKids over the years. I believe that anything that can be done to help those trailing behind us is worth it. As I appreciate all those CF fighters in front of us who paved the way!
I am so grateful for all the amazing people from the CF community that my family and I have met over the years. I have a group of CF moms that I always rely on for information and support! To see friends, family and the community come together to support your son and family is truly overwhelming.