Rory entered the world on April 1, 2017 — a healthy little boy born without any complications, weighing nine pounds and three ounces. First-time parents Clayton and Kendall were ecstatic.
For the first three months of Rory’s life, things were going smoothly for the Saskatoon family of three. That was until one day when Rory started showing some unusual behaviour. His body went limp, his eyes stared off, and his breathing became shallow, all of which lasted for around 30 seconds before returning to normal.
The next morning Rory continued to have a couple more brief episodes, and his parents knew something wasn’t right. As they prepared to head to the hospital, Rory became totally stiff, his breathing became laboured, and his colour began to change. He was then rushed to the emergency in Saskatoon. Once Rory was moved to a bed in the emergency, he had a seizure that lasted for five minutes.
“This is where the world had changed forever for our firstborn,” Kendall recalled.
Rory started going through multiple tests, including an electroencephalogram (EEG), which confirmed he was experiencing a form of seizure activity. He stayed in hospital for about a week and was put on epileptic medications, which had sedating side effects.
“For us as first-time parents, it was beyond devastating, heart-wrenching and scary. Our thoughts were going 90 miles an hour, wondering if our son will make it. There are truly no words to describe how scared we were,” Kendall said.
It was on July 17, 2017, when Rory had his follow up EEG that showed a definite brain pattern. It led to him being diagnosed with a rare form of epilepsy called West syndrome, also commonly known as infantile spasms.
Rory has since been on countless medications, many of which have drastically sedated him. He has had CT scans and MRIs, as well as metabolic and genetic testing. With all the tests that have been completed, the cause for Rory’s condition is currently unknown.
Because of the condition, he currently has global development delay, resulting in Rory being non-verbal, fed via a gastrostomy tube, and being unable to sit or stand unassisted. Currently, his seizure activity consists of drop and absence seizures two to three times a day. Despite Rory’s struggles, the three-year-old has a smile that can light up any room. He loves being a big brother to his little sister, and also enjoys Disney movies, Elmo, reading books and being outside.
“Rory is our hero. He has been through so many tests, blood draws, procedures, medications and diets. Rory’s fight and strength are always present. He has a contagious smile that is present even during tough times. He reminds us that regardless of what kind of day we have, we should smile and find the good in every situation. He has taught us so much about life and continues to,” said Kendall.
“We are extremely grateful for everyone who is on Rory’s health care team, and after three years of regular visits, they feel like a second family,” said Kendall. “The doctors and nurses are always going above and beyond to help make sure all treatment plans and procedures are in the best interest of Rory. We, as a family feel well taken care of by the team every time we step into the hospital. It definitely helps to alleviate any of that stress or anxiety we may have. We are so grateful to have such a caring, compassionate and supportive team look after Rory on his journey,” Kendall said.