Kael’s Story
When Kael was introduced in 2014 as part of the SickKids Better Tomorrows campaign, he was a sevenyear-old with one of the few recorded cases in the world of an autoimmune disorder called Stat 1 mutation.
His condition is so rare that he was almost five years old by the time he was diagnosed through genetic testing at SickKids.
His parents, Emily and Andrew, were devastated to learn that Kael was unlikely to live past the age of 12, but they were determined to do whatever it took to give their son more time in the hope of finding a cure.
A bone-marrow transplant was Kael’s best chance at living a longer, healthier life. His three siblings, older sister Charlotte and younger brothers Eamon and Lochlan, were tested, and Eamon was found to be a match.
Kael was admitted to SickKids for the transplant in November 2013, and his life — and his family’s life — was put on hold. A variety of medical issues post-transplant kept him in isolation for many months. In January 2014, he had emergency surgery to remove part of his intestine. Losing weight and strength, Kael was started on intravenous feeds that April. In the summer of 2014, he was treated for fungus in his lungs.
The many complications and the lengthy hospital stay left Kael so weak that he lost his ability to walk. He needed a lot of therapy to regain it.
To keep everyone’s spirits up, his family and the SickKids staff on the 8th floor bone-marrow-transplant unit developed special activities and events. Dress-up days were a favourite, including Sports Jersey Day, Superhero Day and Wear-Your-Pyjamas Day.
On his 100th day in hospital, Kael’s nurses wrote songs for him and sang them at his bedside, including one to the tune of the Pharrell Williams hit “Happy.” On Kael’s 200th day in hospital, his nursing team gave him a book filled with messages from staff that completed the phrase “Kael is special because…”
The SickKids Paediatric Advanced Care Team (PACT) found many ways to help him, including introducing his family to massage therapy, which aided his recovery. And whenever Kael was well enough to participate, dedicated teachers at SickKids made daily visits to give him bedside school lessons.
Today, after more than 400 days in isolation at SickKids, Kael is living at home again. He needs to wear a mask in public because his immune system is still compromised. He visits SickKids and his local hospital often for monitoring and checkups. He’s being reintroduced to food and is regaining energy and strength after learning to walk again.
Now eight years old, Kael was able to return to school in September. He’s joined a hockey team, participated in cross-country at school and is determined to be as active as he can be.
Now eight years old, Kael was able to return to school in September. He’s joined a hockey team, participated in cross-country at school and is determined to be as active as he can be.