Emery-Jordin has never let seizures slow her down. Her mom, Kelsy, speaks fondly about how Emery-Jordin hit milestones early – she even started walking at eight months old! – and despite all the challenges she’s faced, she’s somehow maintained the sweetest demeanor and a positive outlook on life.
As a baby, Emery-Jordin would have the odd episode where she would just zone out and at one point, she started having convulsions. However, because she was sick at the time and children sometimes experience febrile seizures from fevers, Kelsy and her husband Tanner were hopeful it was an isolated incident. Unfortunately, when this happened again, they were forced to accept that something more was going on. At the hospital in their home community of Olds, they were told to take Emery-Jordin to the Alberta Children’s Hospital right away. There, following tests and surrounded by neurologists, their 11-month-old baby girl was diagnosed with epilepsy.
Though surgery is an option for some epilepsy patients, it’s not for Emery-Jordin as her epilepsy is not in a specific area of her brain that can be targeted. This means the best treatment path for her has been to try and identify the right combination of medications to control her seizures while having the fewest and least harmful side effects. As epilepsy presents differently and reacts to medications so differently from person to person, it can be a difficult process to pinpoint such highly personalized treatments. In Emery-Jordin’s case, many different medications with varying degrees of success had to be tried and adjusted in order to land on the two drugs that are currently keeping her seizures at bay. They aren’t without drawbacks, though – these medications do affect her memory and focus. However, electroencephalogram (EEG) monitoring shows that without them, Emery-Jordin would be experiencing seizures every 1-2 seconds.
Over the last several years, Emery-Jordin’s family has been cared for by neurologist Dr. Julia Jacobs-LeVan, who is also the director of the Alberta Children’s Epilepsy Program. Despite the ups and downs, Dr. Jacobs-LeVan has been a shining light, unwilling to settle for ‘good enough’ and always wanting to do better for Emery-Jordin, says Kelsy. “Dr. Jacobs-LeVan has given us a tremendous amount of hope,” she says. “She never makes us feel like we need to accept the state we’re in, she’s always open to new things and finding better treatments – she wants more for us.” At the same time, Dr. Jacobs-LeVan has encouraged the family not to be held back or controlled by the seizures, or fear of seizures, which has been life-changing, says Kelsy. “She empowers us to really live,” she says. “To do things and find joy and not let our lives be taken over by fear.”
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The Alberta Children’s Hospital has always been – and will continue to be – an important part of Emery-Jordin’s life. Kelsy is so grateful for Dr. Jacobs-LeVan’s expertise, persistence and especially hope.
