In just three years of life, Scarlett Seymour has undergone countless pokes and procedures. Now, in preparation for yet another surgery, the Port Sydney community is rallying behind Scarlett through the Mary Lake Marathon on Oct. 10.
Scarlett was born with a large omphalocele, meaning her liver, stomach, gallbladder and bowels developed on the outside of her body. Fellow Port Sydney resident Robin Mounsteven always dreamt of putting together a marathon after participating in 14 different marathons across the world. When he heard about Scarlett’s upcoming surgery, he knew then and there that this was his chance to launch a local marathon while also helping his community. He started planning the marathon and created a GoFundMe to go along with it on Sept. 2, setting a $5,000 goal for the fundraiser.
“We’ve smashed that goal,” Mounsteven said. At the time of publication, the fundraiser had raised over $8,000. “I’m really humbled, and I’m curious and excited to see what it could become. Five thousand was a great starting point, but the sky’s the limit.”
Mounsteven has since upped the fundraising goal to $10,000, which will help cover the Seymour family’s expenses for travel, accommodations, food and more when they head to Toronto for the procedure next month. Due to a quick turnaround from Mounsteven’s idea to the actual event, he was unable to get the permits and other permissions necessary for a full-scale marathon, so this year’s event will be more of a test run.
Locals can participate in a 5-kilometre fun run, but Mounsteven will be running the full 42-kilometre distance alone on Oct. 10. He plans to launch a larger scale version of the event next spring, hoping to make it an annual run with new fundraising recipients each year, and the Seymour family is the perfect beneficiary for the inaugural Mary Lake Marathon.
Mounsteven has known Scarlett’s mother Amanda for about four years through teaching and he met Scarlett’s father Jay when a tornado ripped through their neighbourhood in June 2020. Jay was the first one to offer help cleaning up fallen trees and debris, Mounsteven said, and Amanda is the same way, always offering support to her students, colleagues and other community members.
“They’re always there to help,” Mounsteven said. “Why don’t we as a community rally around these people who are always the ones who are there to help us? Essentially, that’s what I wanted to give people: the opportunity to say thank you and to support through a great initiative like this.”
Putting together the marathon and fundraiser has been a fulfilling and humbling experience, he said. As the father of two kids around the same age as Scarlett, it’s been emotional for Mounsteven, and it’s even more emotional for Amanda and her family. They’ve been through many ups and downs since Scarlett was born. After spending the first six months of her life in the hospital, a surgery that was meant to send her home nearly took her life.
“She ended up going septic, having a code blue called at the hospital, and we were told to call our whole family in because there was no way that she was going to survive at six months of age,” Amanda said. “For some reason, she’s spunky, sassy, she came through this surgery.”
After that, Scarlett was on dialysis and continued her stay in the hospital for a total of over 500 days before returning home to Port Sydney for the first time. There’s been many return visits to the hospital since then, but Amanda said they’re on a good path with Scarlett’s health and the support from their home community has made a world of difference.
During Scarlett’s initial hospital stay, community members and local restaurants came together to create a fundraiser that brought in over $14,000 for the family. Another fundraiser a few months later raised nearly $4,000, so when Amanda heard that Mounsteven wanted to support them through yet another fundraiser, she was speechless.
“Our family is over the moon ecstatic that we have such a support system for our daughter,” Amanda said. “It’s going to be a long road for her [with] surgeries up until even her teen years, so it’s an overwhelming feeling.”
Scarlett has been on breathing support since birth and uses a feeding tube, but that should change with surgeries to come, Amanda said. In Scarlett’s next surgery on Oct. 28, doctors will be putting half of her stomach into her body to see if she can tolerate it. Putting her organs into her body too quickly could compromise her heart and lungs, Amanda said, so it’s a long process that they’re approaching with caution.
Every time Scarlett undergoes a surgery, gets her blood drawn, or has any other poke or procedure, she gets a bravery bead from her team at SickKids. She’s already collected hundreds and hundreds of beads, so it means a lot to her family to have the community’s support as she goes to collect even more in Toronto next month.
“I want to thank each and every person for their phone calls, their love, their support, just listening to her story, following our journey,” Amanda said. “This little girl’s so brave.”