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Sara remembers the day Sebastian had his first seizure. They were at home and he was screaming and crying, she thought for his bottle that she was a few minutes late in preparing for him. When she turned around to feed her little four-month-old, he was stiff and blue. He had stopped breathing. Sara, who happens to also be a neonatal nurse at the Foothills Hospital, quickly began performing CPR on her lifeless baby while she waited for paramedics to arrive to take him to the Alberta Children’s Hospital.
An MRI revealed a brain malformation called polymicrogyria that causes severe neurological problems including motor function, cognitive delays as well as seizures. It’s a condition that affects only 7,000 people in the world. Suddenly Sara and her husband were faced with the devastating news their son might never talk or walk, and the possibility he may not live past the age of five. For their little family, their life involves feeding tubes, seizure medications, and when Sebastian was six months old, the highly regimented high fat, low protein Ketogenic diet to help control his seizures that were sometimes so severe they would last hours, or cause him to go unresponsive.
It’s why they are so grateful for respite care at Rotary Flames House, which offers the Dohertys a temporary break from Sebastian’s round-the-clock care and gives him a fun vacation of cuddles with his other “five mamas” – his compassionate, dedicated caregiving team – who he never wants to leave! When the family stays there, it feels like they are going home to Mom’s, and when they leave him there for his vacation, they know he is in the best hands. Sara can enjoy a date night with her hubby, or get a full night’s rest, knowing he is being cared for by this loving team.
Sebastian loves going for walks and playing games with his nurses, smiling and laughing. At Rotary Flames House, Sebastian is full of life. For his parents, it’s a place they can find comfort and normalcy.
Sara and her husband are grateful for the amazing staff at Rotary Flames House who have become like a second family to their little Sebastian. Respite care has provided some normalcy to their life of unknowns and has allowed them to treasure the time they have with their little guy.