Red Nose Day: Perth parents Cassie and Luke Otway honour two-year-old Sadie after fatal febrile seizure

Just two weeks after blowing out the candles on her Frozen-themed second birthday cake, little Sadie Otway went down for her lunchtime nap and never woke up.

October 5, 2024, was a morning that started like any other, but, by mid-afternoon, Cassie and Luke Otway were standing in a hospital room facing an incomprehensible reality.

“When you’re walking out of the hospital without your baby, getting into your car and your car has a car seat in the back but no child in it . . . I can’t describe that feeling to anyone,” Ms Otway said.

“We decided it was time to go because she had turned blue and we didn’t want to see her and remember her like that.

By two, she was reciting the entire solar system, counting to 20, and listening attentively to long storybooks.

“Her favourite was Horton Hears a Who . . . she would pay attention to it completely for the whole way through from about six weeks of age.”

She loved music, dolls, pink tutus, and looking at the stars in the night sky — a quiet routine her parents still carry out whenever they want to feel close to her.

Her death was officially left as undetermined, though coronial evidence noted signs of a febrile seizure.

Like thousands of Aussie parents, Mr and Ms Otway had been repeatedly told the condition was common, harmless, and something children simply outgrew.

“At the hospital, we were told that febrile seizures are very common, that some kids go on to have more, but that they’re fine,” she said.

“We were essentially given a one-page handout . . . we truly believed that they were fine and harmless and that she would grow out of them.”

Full genetic testing later returned clear, leaving the couple with a devastating lack of definitive answers.

“We just need to change the language from doctors and from anyone who is saying febrile seizures are harmless,” Ms Otway said.