LEXINGTON, Ky. — A Lexington family is using a children’s book to give back to the University of Kentucky (UK) Healthcare's Kentucky Children’s Hospital after their infant son spent several months there while fighting a rare, life-threatening condition.
At seven months old, Betsey McCamish said her son, Rory, was perfectly healthy and had no known medical concerns. His good health made it particularly shocking when she received a call from Rory’s daycare, telling her that Rory was unresponsive and they were calling 911.
“Honestly I thought that it was an allergic reaction,” McCamish recalled. “He was getting into more foods and he’d eaten a muffin in the morning and so I was just praying to God, like, ‘Dear God, please get him an EpiPen as soon as possible. Just open his lungs, open his heart.’ I remember that prayer. I was just praying for an EpiPen because that’s all I thought it was.”
Rory was rushed to Kentucky Children’s Hospital where McCamish and her husband, Tyler, learned his condition was far more severe than an allergic reaction. Rory had a brain aneurysm that ruptured, causing bleeding into his brain – a condition extremely rare in infants. Over the following weeks, he suffered multiple strokes, multiple bleeds, and underwent multiple surgeries.
According to Johns Hopkins, pediatric stroke affects one in every 4,000 infants each year. Pediatric brain aneurysms are even rarer. About three percent of the world’s population has an un-ruptured, asymptomatic brain aneurysm, and of those people, just 0.5 to 4.6 percent are children, according to Boston Children’s Hospital.
Rory recovered from several minor strokes, but it was one severe stroke that changed his life forever.
“After the stroke, we had to reteach him everything. He was nine, almost 10 months old, and he couldn’t hold his head up; he was like a newborn baby. He couldn’t sit up, he couldn’t roll over,” McCamish said. “It was apparent right away that he was going to be significantly delayed in all of his motor milestones.”
Rory was diagnosed with hemiplegia, or moderate to severe paralysis, of his right side and spasticity, a form of cerebral palsy, that makes his arms and legs stiff and difficult to move. McCamish said UK helped Rory get into an intensive therapy program at Cincinnati Children’s Hospital Medical Center where his recovery began.
Now two years old, Rory is making great strides and inspiring others with his ever-present joy.
“Oh my gosh, he’s come such a long way since a year ago or even beyond a year ago. He is so mobile and challenging me just like a normal toddler would challenge their parents,” said McCamish.
It was Rory’s courageous battle that inspired McCamish’s cousin, Arianna Zielinski, to write a children’s story about his brave journey. The Ball State University theater student surprised the McCamish family with the book, revealing it over a Zoom call.
“She asked our permission to publish the story and share his story with the world, and of course we said yes,” McCamish said with a smile. She was honored that Rory’s story was still touching people’s hearts more than a year after being discharged from the hospital.
“That’s the thing that kind of shocks me and just amazes me and makes me tear up when I think about it is that people are still cheering for him and they’re still rooting for him,” said McCamish, her voice full of emotion. “To me, that’s just amazing that we’re over the fight for his life but we’re not over his journey and we won’t be over his journey for a long time but people are still here for it and they’re still following it.”
The book, “Rory the Lion and His Magical Smile”, tells the story of a special lion cub who gets hurt, putting his magical smile in danger of losing its magic. Readers follow Rory and his parents as they navigate through the most challenging time of their lives.
A portion of the proceeds benefits the Child Life program at Kentucky Children’s Hospital, a group that holds a special place in the McCamish family’s hearts.
“Child Life is the group of people that turn the hospital into a home and make a scary experience a pleasant experience. So it was really important to me that we give back to them and continue to help fund the good work that they’re doing,” McCamish explained.
Child Life helped the McCamish family get through the long three months Rory spent in the hospital. Anytime he got an IV, McCamish said Child Life would be next to Rory playing with toys in his face and singing songs to distract him from the scary thing that was about to happen. They also brought Rory storybooks and toys and cycled them out regularly so he wouldn’t get bored. When McCamish and her husband needed a break for lunch, coffee, or to take a shower, Child Life would stay with Rory so he was never alone. They also do special celebrations and activities for hospitalized children by providing entertainment and a sense of normalcy on holidays and birthdays.
McCamish hopes Rory’s journey will continue to inspire others and raise awareness about pediatric strokes and developmental delays.
“He’s going at a slower rate than other kids but he is showing signs to progress and signs that he will get there eventually,” said McCamish. “I’m just so grateful that we’ve even gotten to today.”
“Rory the Lion and His Magical Smile” can be purchased on Amazon.