At just nine years old, Jace was a vibrant, energetic boy who lived for sports, laughter, and spending time with his family. Known for his curious nature and inquisitive mind, Jace was always the life of the party, a true extrovert who loved making new friends and engaging with everyone around him. Whether he was kicking a soccer ball in the backyard or striking up a conversation with anyone in earshot, Jace was the epitome of a lively, healthy child.
But everything changed one fateful afternoon when, after a typical school day, Jace complained of a headache. Within moments, his condition worsened, and he collapsed. His mother, Kylee, quickly called emergency services, and before long, Jace was being rushed to the hospital. In a shocking twist, what seemed like a harmless headache soon turned into a life-threatening medical crisis. Jace was diagnosed with an arteriovenous malformation (AVM)—a rare condition where abnormal blood vessels in the brain become twisted and enlarged, putting him at immense risk.
The following hours were an emotional blur. A CT scan revealed that Jace had a brain bleed, and his condition rapidly deteriorated. Kylee and her husband, Michael, were left in shock, not knowing what the future would hold for their son. Doctors acted quickly, transferring Jace to a children’s hospital where he underwent life-saving surgery to relieve the pressure on his brain. The surgery was successful, but it was only the beginning of an incredibly challenging journey.
Five days after the first surgery, Jace had to undergo another procedure to remove the AVM and blood clot. The family was told to expect possible side effects, including impacts on Jace’s coordination, speech, and motor skills, but nothing could prepare them for what came next. After coming out of the medically induced coma, Jace faced a whole new reality—he could no longer walk, talk, or swallow. He had developed Posterior Fossa Syndrome, a neurological condition that affects coordination and speech, and ataxia, which left him with a severely impaired ability to move and communicate
For the next 12 weeks, Jace remained in the hospital, starting the long and painful road to recovery. Kylee stayed by his side, while Michael juggled work and caring for their three other children—Tanesha (16), Izzy (14), and Trinity (12). Every day was a struggle, not just for Jace, but for the whole family, as they navigated the challenges of hospitalization and the uncertainty of Jace’s recovery.
“The first month, Jace couldn’t leave his hospital room,” Kylee recalls. “It was painful to see my once energetic, outgoing little boy stuck in a bed feeling completely out of control.” Jace’s recovery seemed daunting, but even in the face of adversity, he remained strong and determined. He slowly began to regain some abilities, but progress was slow, and the emotional toll was hard on the whole family.
It was during this incredibly difficult time that Starlight Children’s Foundation came into Jace’s life, bringing much-needed relief and joy. “The Captains Starlight were the bright spots in his hospital days,” Kylee says, tears in her eyes. “They always put a smile on his face. As soon as Jace saw them, his whole face would light up.” The Captains brought laughter, games, and even slime-making sessions to help distract Jace from the pain and isolation of his treatment. He looked forward to Starlight TV’s Bingo sessions and loved joining in on the fun whenever he was well enough to leave his room.
As Jace’s strength grew, he became more involved in the Starlight Express Room, a space designed to offer kids in the hospital a break from the daily routines of medical care. “The Starlight Express Room became Jace’s favourite place,” Kylee says. “We’d visit six days a week! He loved the art projects and activities, and it gave him a sense of normalcy amidst everything going on.”
While Jace spent most of his time in the hospital, his family’s visits to the Starlight Express Room allowed them to bond and create happy memories during the toughest of times. His siblings, Portia (16), Izzy (14), and Trinity (12), also enjoyed spending time in the Starlight Express Room whenever they visited Jace, helping the family stay connected and focused on the moments of joy they could still experience.
The road to recovery was long, but over time, Jace’s progress became undeniable. He slowly regained his ability to eat, walk, and talk. His speech remained slow at first, but he made tremendous strides, and his family couldn’t be prouder of the progress he had made. “To look back from where he was after surgery to now, he’s made amazing progress,” Kylee says. “Jace is still working hard to regain everything he lost, but he’s made so much progress. He’s back to being active and loves talking about Minecraft.”
Jace has gradually returned to school and is even planning to attend school camp with his dad for support. Although he’s not yet able to return to his favorite sports, Jace has discovered new hobbies, and he’s enjoying the process of finding new ways to stay engaged and active. Despite the ongoing treatment and therapies, Jace is determined to live a full and happy life, showing the world that no setback can keep him down for long.
As Kylee and Michael reflect on the past months, they are filled with gratitude for the incredible support they’ve received, from the medical teams at the hospital to the staff at Starlight. “Starlight lets sick kids be kids again,” Kylee says. “It’s so important for kids in hospital who can’t go out and are missing school, their friends, and social outings, to be able to laugh and play. The Starlight Express Room and the Captains bring joy into their darkest days.”
Jace’s story is one of strength, resilience, and the power of community. With the love of his family, the support of organizations like Starlight, and his own determination, Jace continues to inspire everyone around him. His journey is a testament to the importance of hope, love, and the relentless fight to overcome any obstacle in the way.