SickKids saved Stephanie’s life, over and over again
Stephanie Stavros was born into chaos.
While her mother recovered from an emergency C-section, baby Stephanie, born one month premature, was rushed to The Hospital for Sick Children. Her stomach was dangerously distended, requiring an emergency operation.
The surgery was a success. But that initial trauma was a manifestation of a deeper problem: cystic fibrosis.
Cystic fibrosis (CF) is a genetic disease affecting the lungs and digestive system. For Stephanie, growing up with CF meant being unable to digest food without digestive enzymes. It meant severe lung infections and bowel obstructions so excruciating they’d cause her to double over in pain.
It meant visits to SickKids every three months — on top of all the times she ended up in the hospital’s Emergency Department, howling in agony. And yet when she thinks back to her time at SickKids, it’s not fear she remembers, but pride. “I spent so much time there that it was almost like a patriotic feeling, growing up in SickKids,” Stephanie explained.
Through its compassionate care, SickKids helped normalize CF, so the disease felt like a part of Stephanie’s everyday life, not some dangerous aberration. Plus, it gave her perspective. “Kids are naturally focused on themselves,” she said. “But walking the halls and witnessing the struggles of other families and kids — it just gives you a completely different upbringing.”
In 1989, news broke that SickKids had helped discover the gene responsible for cystic fibrosis. “Even as a six-year-old, I could feel that ripple of joy and hope,” Stephanie said.
But buried within the joyous news was a bitter truth: Most people with cystic fibrosis didn’t live past 25. The night of the discovery, Stephanie broke down crying, overwhelmed by emotion and the unfairness of it all.
Still, she had hope — with progress came possibility.
“Every time we went to a clinic appointment after that, my favourite nurse would say, ‘We’re so close; they’re making such big progress,’” Stephanie said.
The older Stephanie got, the worse her condition became. In her pre-teens, her lungs began to fail. In her late twenties, her left lung collapsed at work, forcing her to spend eight weeks in the hospital hooked up to chest tubes. But Stephanie refused to give up hope.
She got married. She travelled the world. And with her sister as a surrogate, she had a beautiful baby boy.
“As a child, I never dreamed of being a mother. I didn’t think it was in the cards for me,” explained Stephanie. “But today I’m a mom. My mom is a grandmother to my boy. And there’s a new generation! How incredible is that?”
At 38, Stephanie is happier and healthier than she’s been in years. Today, she’s able to skate, ski and snowboard. That’s all thanks to that original SickKids discovery in 1989, and everything it has made possible since, including revolutionary new treatments.
Still, SickKids refuses to stop fighting. The hospital treats hundreds of patients with CF, and continues to pursue breakthrough research. The heart of that research is the Program for Individualized CF Therapy, which uses patients’ stem cell-grown tissues to test and guide treatments.
The science is complex, but the goal is simple: for every kid with CF to have access to treatments that work for them, so they can lead happy, healthy lives. Just like Stephanie.
Torstar, the Star’s parent company, is in a fundraising and educational partnership with The Hospital for Sick Children to help raise $1.5 billion for new facilities. This content was produced by SickKids as part of that partnership.