Sam has been living with an undiagnosed genetic syndrome. From multile genetics tests to procedures like strabismus correction, radiology with sedation, hip surgeries and the development of osteopenia and epilepsy, the care and support Sam and our family receives is unmatched. After a 10 year wait, Sam was officially diagnosed with ReNU syndrome in August 2025. Sam has been followed closely by Dr. Caluseriu in genetics since he was an infant in the NICU. This is a remarkable development and step for Sam’s family, and a testament to the importance of genetic research and testing.

At 10 weeks old, Marigold began showing signs of breathing trouble. She was struggling to breathe without extensive effort. Her family brought her into emergency, and she was admitted right away. At that time, doctors suspected a cold and discharged them five days later. They quickly returned but this time via ambulance. Marigold was immediately admitted to PICU on high flow oxygen, and she was diagnosed with aspiration pneumonia. This began the family’s feeding journey.

Aubree was born 24 weeks and five days, weighing 680 grams. She had a long road filled with overcoming a PDA, brain bleed, surviving NEC, surgery, cardiac arrest, multiple infections and, of course, needing to grow. Her family still uses the Stollery today for her follow-ups and when she gets sick requiring additional support.

Jace’s family knew he would be born with a kidney condition, and at six weeks old, theyfound out his left kidney didn’t work. In June 2018, Jace was having fevers, not eating, not sleeping and complaining of pain in his tummy all the time. Urology tests didn’t show anything was wrong but they could see things weren’t good. Later that year, Jace’s parents approved a surgery to remove his kidney and ureter, not knowing if it would solve Jace’s health issues. Since his surgery, Jace has grown like a weed and is back to being his funny, silly self! Jace’s parents know surgery was the right choice for their son, and feel like to have the Stollery so close to home.

Sarah Butson is CEO of the Canadian Lung Association