Parise’s pregnancy was ordinary in all the ways you hope for—until the moment her daughter, Kamie, was born, and doctors noticed something unusual about her tiny feet. This moment marked the beginning of a years-long IWK care journey, full of tests, treatment and surgeries that helped Kamie become a thriving 14-year-old who loves Zumba and school.
Before Kamie’s birth in 2012, there were no signs that anything was out of the ordinary with her development.
That’s why it came as a surprise when, shortly after Kamie was born, her doctor suspected she could have clubfoot—a congenital condition in which a baby’s foot or feet turn inward. Kamie was immediately referred to the IWK for further care and investigation.
Although her IWK care team ruled out clubfoot, Kamie required a lot of physiotherapy therapy at home to support the development of her feet, including needing to wear a pair of special shoes. In hindsight, this was the first sign that something more was going on in Kamie’s small body, and it marked the beginning of her IWK story.
When Kamie was just three months old, she was referred to the IWK again after a checkup with her doctor in New Brunswick discovered a heart murmur, which came as another shock to her parents, Parise and Martin.
Kamie was referred to the IWK’s cardiology team, and at 18 months old, she underwent open-heart surgery.
As doctors worked to understand the cause of her ongoing health issues, Kamie underwent genetic testing at the IWK to look for clues in her genes. When she was three years old, Kamie was diagnosed with a rare and progressive condition called Maroteaux–Lamy syndrome (MPS-VI), which causes many tissues and organs to enlarge and become inflamed or scarred.
Kamie was one of the first patients at the IWK diagnosed with MPS-VI. While there’s currently no cure, the condition is managed through ongoing treatment. To date, Kamie has had 10 surgeries in total, including two open-heart surgeries, a hernia repair and carpal tunnel surgery, as well as a cervical laminectomy (a surgery to relieve pressure on the spinal cord and/or nerves in the neck). Kamie also underwent VP shunt surgery to drain the excess CSF fluid in her brain.
“We don’t want to be too excited, because we know any day, any time something can pop up,” says Parise. “We know she’s going to have more surgery throughout her life.”
Since Kamie’s last surgery in 2023, she has been visiting the IWK twice per year. This frequency feels much lighter for the family, who made the hours-long trip from their home in New Brunswick to the IWK in Halifax each week for the first five months of Kamie’s treatment in 2015.
While the family’s travel to Halifax is minimal these days, they take advantage of the IWK’s video, phone, and travel clinic services multiple times per year. Last year, 2025, marked 10 years of MPS-VI treatment for Kamie, who is now a thriving young teen.
The IWK has been a home away from home for the family. “Kamie has a big team at the IWK,” says Parise. “The first few months with MPS-VI were especially scary, because it’s not a common diagnosis. However, despite fear and uncertainty, they never once doubted the doctors and nurses at the IWK. “We feel very safe and secure,” says Parise.
Kamie’s diagnosis required her care team to undergo specialized education and training related to her enzyme replacement therapy, ensuring she would receive the best possible care. “They just have a way with kids that feels so safe, and you just trust them so much,” says Parise, as she reflects on the family’s experience with each of Kamie’s many care teams across the IWK.
For Kamie, getting to know her doctors and nurses is comforting. The IWK’s Child Life team played a large part in making her comfortable, even using dolls to show her how they would insert her IV to administer her treatment.
From an early age, Kamie knew she wouldn’t be like other kids. While she can’t do the monkey bars on the playground or a backflip in gymnastics, Kamie focuses on what she can do. “Despite everything she’s been through, she’s a fighter, and she has a lot of courage. She’s always smiling and making everyone’s day. She’s funny, really funny. She’s working hard, but she’s never giving up,” says Parise.
When asked why people should support the IWK, Parise says, “Everybody knows someone who needs the IWK. It can save someone you know.”
