My name is Melissa Smith, I’m a registered nurse and my husband, Matthew, is a photojournalist. We have two wonderful children – our son Leroy, who just turned five and began kindergarten last fall, and Abigail, who is two years old. Our family enjoys biking and swimming in the summer, as well as skating or sledding in the winter months, and we often spend our time together exploring playgrounds, museums, and green spaces in our city.
Leroy was diagnosed with cystic fibrosis (CF) at about three weeks old, through the newborn screening program. Perhaps it is because of my work in healthcare, that his diagnosis came as less of a shock to me than it had for Leroy’s grandparents. I did worry about his health and future, but we were grateful to receive an early diagnosis and were interested in the treatments available to him.
Understanding what CF means for Leroy and our family is life-long. He’s young and has generally good health, so he still has good lung function. However, we’ve learned that CF requires carving out a lot of time for daily treatments and being cautious about respiratory infections – something the whole world can now relate to!
It also means being grateful for Leroy’s good days and leaning heavily on our community and healthcare system to get him through his illness. I think the heroes of our support network are Leroy’s grandmothers – all of whom care for him and help us to raise him in important ways. Grandfathers, aunties, uncles, and friends also play an important role, and the CF community in our area is incredible. During Leroy’s last hospitalization, he turned four during his stay and Abigail was still nursing so I couldn’t be there for him around the clock. Our family made a schedule and for two weeks, they took turns visiting and sleeping over so he wouldn’t be alone in a strange place. I don’t know what I would do without them.
Leroy is a happy and gregarious kid. He’s active, bright, and loves nothing more than making new friends which, unsurprisingly, is Leroy’s favourite part of the Walk to Make Cystic Fibrosis History.
We participate in the Walk because it’s one of the ways that we show up for Leroy and our CF Community. We want to support others on the same journey as us, and we believe in the work that CF Canada is doing to support clinical care, research, and advocacy.
The Walk is also the first place that I connected with other CF parents, and seeing their children with CF grow and thrive from year to year has become one of my favourite parts of the Walk. I was first introduced to the Walk by a friend when Leroy was just 6 months old. She was a team captain at the time, and also had an infant child so we walked wearing our babies! Many of the people who supported us then are still with us every year.
Although last year’s Walk went virtual, we still had a lot of fun and challenged ourselves to create “coronavirus greeting cards” that people could send to friends and family members in lockdown. We want people to register for the virtual Walk this year because people like Leroy really need our collective support. He works hard to stay healthy and as parents, we do everything we can to provide him with the care he needs, but there are treatments currently out of our reach. If we’re going to preserve his lung health and quality of life, we need better access to medications, and part of Cystic Fibrosis Canada’s work is to fight for this access. It’s just one of the many things they do and one of the many reasons to sign up for the virtual Walk.
For over 15 years, the CF community has come together every year at the Walk to Make Cystic Fibrosis History, united in the pursuit of a cure. Due to the ongoing global situation caused by COVID-19, the walk will remain virtual format in an effort to keep our community safe.
This year, we invite you to #GoFurtherFor the virtual Walk to Make Cystic Fibrosis History. Register, fundraise and donate, and complete your challenge by or on Sunday, May 30th, and join participants nationwide as we push through barriers for all children, parents, and individuals with cystic fibrosis.Register now