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Rowan


Boone

On Friday, June 4, 2021 we were absolutely elated to welcome Rowan into the world and into our family. While the delivery was blissfully uncomplicated, the hospital medical team wanted to check on a couple of things they were noticing and kept us around for monitoring. It wasn't long until the monitoring and testing gave cause for serious concern: the pediatrician at Guelph came back to our room to share that Rowan had been having regular seizures, and we would need to be transported to the NICU at McMaster for further treatment. The medical team at McMaster discovered that Rowan's seizures were occurring for 2-4 minutes at a time, with only 2-4 minutes between each one.

 

Within a couple days the medical team had the seizures under control for the most part and began to focus their attention on identifying the cause. At four months of age, Rowan was officially diagnosed with SLC13A5 Citrate Transporter Disorder, a newly discovered and extremely rare genetic cause of epilepsy. Besides seizures, the disorder causes low muscle tone, delay in motor skills and neurological developmental, and severe difficulty with speech production, among other symptoms.

 

Now three years old, Rowan continues to grow and navigate the hurdles posed by the SLC13A5 disorder. His seizures are well managed with the help of five daily medications. A significant focus for Rowan has been reaching developmental milestones such as sitting independently, which he works on with determination and the support of various therapies. Because his low muscle tone impacts the muscle systems involved with swallowing, Rowan uses a g-tube for all of his nutritional and medication needs.

 

Despite all the obstacles he has faced and will continue to face, Rowan is a playful, energetic, and positive kid. Rowan loves interacting and playing with friends both new and old, sporting his signature glasses and a permanent smile. He loves being sung to, playing with his toys, and most recently trying small tastes of food as we work toward improving his chewing and swallowing abilities. We're so grateful to the Guelph Wish Fund for accepting Rowan and look forward to fulfilling his wishes as he grows!


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