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Updated: Jul 2, 2021

In July of 2017, at the age of 3 months, Rory was diagnosed with a very severe & rare seizure disorder called infantile spasms or also known as West Syndrome. This disorder causes high spikes in the brain waves followed by flat periods. This causes many spasm like seizures and makes it hard for a child to develop with all of the chaos going on in the brain. Infantile spasms can also be difficult to treat, which has been the case with Rory. He's has been on approximately 11 different types of medication as well as the keto diet and still hasn't found full relief.

Rory has been followed at JPCH in Saskatoon and also went for a second opinion to Calgary’s Children’s Hospital to see a neurologist who specialized in infantile spasms. He reassured us that what we were doing with our neurologist here was the right course of treatments. Rory has also been taking ABM lessons in Saskatoon at Body In Mind Therapies and we have noticed improvement in Rory's development. He also had the opportunity to go to Toronto to see Judith Dack, an ABM practioner and did very well with her.

Rory is also followed by genetics team in hopes to find the cause of Rory's condition. To date, there is no known cause for Rory's condition however they recently ran a full genome test and there are 2 variants of unknown significance which will be studied further.

In April of 2020 Rory had his follow up MRI and the results from it were not ideal. Rory has atrophy to his cerebrum & atrophy to the white matter in the cerebellum. We are uncertain if this is related to his condition or to medications and will be monitoring it closely.

Throughout his journey, Rory lost the ability to eat by mouth because he was silently aspirating. Initially he was fed via an NG tube, which went through his nose down into his stomach. In May 2019 we decided that it was time to get rid of the NG tube from Rory’s face as his skin integrity was getting bad. As a result, he had his G-tube surgically inserted. Rory is exclusively G-tube feed & we make him a blended diet. We do offer him tastes to keep practicing in hopes he may eat by mouth one day.

Our little man has preserved through all these obstacles with very minimal tears, he is always smiling & laughing no matter what he endures. He truly is our warrior & such a fighter!


Follow Along with Rory's Journey on Facebook: Rory Martens and His Journey

You can also follow along with Rory's Mom, Kendall, on Instagram @martens_k

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