Throughout the month of May, Lindsay MacDonald and Jesse Fraser will be participating in the Million Reasons Run in honour of their son, William, who was born with two rare conditions that threatened his life. William’s first few months of life were a battle, but thanks to the doctors, nurses and staff at the IWK pediatric hospital in Halifax, he is now a healthy, happy two-and-a-half year old.
William was born with Hirschsprung’s Disease, a congenital bowel disease that affects one in 5,000 babies, as well as Tetralogy of Fallot, a complex heart condition that affects one in 3,000 babies. Incidentally, Olympic snowboarder and skateboarder Shaun White and Jimmy Kimmel’s son, Billy Kimmel, were also born with the same heart condition.
The doctors knew there were some abnormalities with William’s heart before he was born that would require surgery, but they were hoping they’d be able to hold off until he was at least six months old. Hirschsprung’s Disease is much more difficult to detect in-utero, however, so this new information after William was born complicated his surgical plan, and he ended up undergoing his first heart surgery when he was just over one month old.
The family ended up spending four months at the IWK. Because the hospital is four hours away from their home in Cape Breton, they had to live at the hospital with their two-year-old son, Ewan. “Everyone at the IWK went above and beyond to help us stay together during such a difficult time,” says MacDonald. “IWK’s social workers helped secure us rooms at Ronald McDonald House and checked in on us regularly. Ronald McDonald House fed us meals, entertained our toddler, and provided a space for much-needed time away from heart monitors and alarms. The Childlife team looked after Ewan during doctors’ rounds and played with him in the playroom. The nurses arranged a dresser and toy box for our room when we realized that we wouldn’t be going home anytime soon–all of this was above and beyond their usual duties!”
In total, William underwent five major surgeries—two open-heart surgeries, a tracheostomy, a colostomy and a pull-through surgery, along with several other procedures in his first year of life. “Pretty much every specialist in the hospital was involved in William’s care at some point–cardiology, general surgery, ENT, genetics, hematology, lactation specialists, dietitians, physiotherapy, occupational therapy, respiratory therapy, the list goes on,” says MacDonald. “The IWK has become a part of our extended family and will remain in our hearts for many years to come.”
MacDonald started running again after William’s first birthday as a way to get some exercise, fresh air and perspective. In the midst of the COVID-19 pandemic, while there was still so much uncertainty around her son’s health and development, running was a way for her to get some alone time. “It was really the only ‘me time’ I got away from the house,” says MacDonald, “because I wasn’t going to work, and I was avoiding being out in public due to the pandemic and William’s vulnerability. Running became a kind of solace or meditation practice for me.”
Starting out with a couch-to-10K program in the summer, things were going well enough that by December, MacDonald decided to train for a half-marathon. Originally, she hoped to run her race at the Bluenose Marathon in Halifax, but the pandemic meant the event was cancelled. Instead, she ended up running her half-marathon on an old marathon route in her community of Lake Ainslie.
“As I ran by my house about a mile from the finish line at the local Scotsville Firehall, I saw a sign on my garbage box that read, ‘Go mama go!'” she says. “It was an emotional moment for me, and tough to hold back the tears, seeing my husband and two boys cheering me on as I ran up the hill. I just thought to myself, ‘we’re doing it, we’re getting through it together,’ and the run kind of became a metaphor for the struggles of our life over the past year and a half.”
William will be a patient at IWK for the rest of his childhood, but today he is a healthy, happy little boy; he no longer requires a feeding tube or a trach, and his colostomy has been reversed. “If you didn’t know anything about William’s story, you might think he was just a typical two-year-old, perhaps a bit smaller than usual, and this is all thanks to the IWK and their amazing support,” says MacDonald. “We’ve simply lost count of the number of times the IWK has saved our son’s life.”
MacDonald’s and Fraser’s Million Reasons Run team is aptly named “William’s Warriors,” and is made up of parents, grandparents, cousins, friends, neighbours and co-workers. “Since William was born, we have been overwhelmed by the kindness and generosity of our community in supporting our family when times were tough, and our experience participating in this run just reminds us of this,” says MacDonald.
The Million Reasons Run is a Canada-wide running event that supports life-saving research at 13 children’s hospitals across Canada. Set your own kilometre and fundraising goal and spend the month of May trying to achieve it. There is still time to join! To register for free and learn more, visit The Million Reasons Run website. To support William’s Warriors in their fundraising goals, visit their donation page here.