At the end of November, Stephanie, Kjell and their twins, Kai and Avery, left for what was expected to be a fun and relaxing vacation in Mexico. On the flight, Avery described leg cramps to her parents, which they monitored but chalked up to growing pains. However, the next day her parents noticed Avery’s left eyelid fluttering, and she had a 20-second seizure. The seizures continued and became more and more violent. After a short trip to an emergency room in Mexico, they flew back to Calgary and headed straight to the Alberta Children’s Hospital. They were admitted to the neurology unit, where Avery was diagnosed with a type of epilepsy called focal cortical dysplasia.
As seizures vary so much in cause, presentation and severity, finding the right treatment can be tricky, as medications that work for one child don’t necessarily work for another, even with the same diagnosis. Doctors first tried a duo of medications to stop Avery’s seizures, which she was having every 20 minutes, however, these particular drugs were not helping. The medications were hard on Avery, and Stephanie says the hospital’s donor-funded Child Life Specialists were a bright spot during a difficult time. They helped Avery with toys and play, which helped her just be a kid.
Because the medication was not effective for Avery’s seizures specifically, their neurologist recommended a targeted surgery on the affected left side of her brain, as doctors had been able to pinpoint the exact area causing the seizures with an MRI.
Pediatric neurosurgeon Dr. Walter Hader was set to perform the surgery, and Stephanie says in the days leading up to the procedure he visited Avery, stopping by frequently to get to know her, which made the whole experience less intimidating. The family’s lives had changed quickly, from being on vacation one week to in hospital the next, but Stephanie said they felt relief knowing they were in the hands of the Alberta Children’s Hospital’s word-class team.
“They helped a four-year-old understand what is happening to her,” Stephanie says. “They were all amazing, from medical teams to nurses, volunteers, programming and Avery loved the Child Life Specialists.” Avery also loved the animal visits from the PALS volunteers.
Dr. Hader performed surgery in December, less than one month after the family’s trip to Mexico, and it was a huge success! Avery went through intensive rehab to help her movement post-surgery, and Stephanie says now she is starting to run, ice skate and go back to school. However, the best part is that Avery has been seizure-free since her surgery! Stephanie describes their journey as a “whirlwind” but she is so thankful to their teams at the Alberta Children’s Hospital for helping her little girl.
