Rowan’s Superhero Story

Rowan is a SLC13A5 Superhero. Here are a few fun facts Rowan’s parents shared with us!

• Name: Rowan
• Age: Almost a year old
• Homecountry: Canada
• Rowan shares his mom and dad’s love for musicals, his favourite song being “Welcome to the Rock” from the musical Come From Away. There are endless giggles and smiles when this song is on.
• Rowan loves being in the water – pools and baths are his favourite and he could spend all day just splashing around.
• His best friends are his cousins, Connor and Jackson! They have given him the nickname “Baby Ronit” (Connor can’t quite say Rowan just yet!).
• The easiest way to get Rowan to participate in tummy time is to have his dad dance and sing around in front of him. We are guaranteed to get some good tummy time this way!
• Rowan is starting to become aware that he has a cat named Latte and is very interested in whatever Latte is doing. Latte could care less about what Rowan is doing but always keeps a watchful eye on our little guy.
• Rowan loves reading, especially books he can touch! His favourite book right now is “If I Were a Bunny” and he loves touching the bunny’s velvety ears while we read.
• Rowan started solid foods back in December and so far his favourite food is raspberries.

A Love Letter from Rowan’s Family

Rowan’s Medical Journey

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. One was some regular grunting, which is not uncommon in newborns especially if they’re still expelling some liquid in their lungs. Another was some shaking of his arms every once in a while, so the team did some blood tests thinking it was low blood sugar. Initial blood sugar results did come back slightly low, so we worked to get those higher, but eventually they were within normal levels and we were still noticing the shaking. Early on June 5, when an x-ray of his lungs also came back clear, the team decided to move Rowan over to the nursery for a bit more thorough monitoring and a 48-hour antibiotic treatment.

A short while later a pediatrician came back to our room to share that Rowan had been having regular seizures, the reason for the grunting and shaking. Everything moved very quickly from there: a team from McMaster, the nearby children’s hospital, was sent over, stabilized Rowan enough for transport, and took him in an ambulance to their NICU. The medical team at the McMaster immediately recognized and shared with us the severity of the situation. Rowan’s seizures, while only 2-4 minutes in length, were occurring just 2-4 minutes apart and were not responding well to the medications they had tried.

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. Over the next month in the hospital they used MRIs, bloodwork, lumbar punctures, EEGs, ultrasounds, and x-rays to eliminate quite a few possible causes: vitamin deficiency, metabolic disorder, stroke, and bacterial infection. They also found a mix of medications that mostly managed the seizures and allowed us to bring Rowan home.

Toward the end of our hospital stay in early July, genetic test results were returning which suggested Rowan may have SLC13A5 disorder, but it wasn’t until October when our own genetic testing came back that we got a definitive diagnosis. We quickly found the TESS Research Foundation and the incredible support network of their staff, volunteers, and other affected families.

Now seven months old, Rowan’s seizures are mostly managed with the help of four medications. Occasionally seizures do break through, and we’ve had to call 911 for an ambulance seven times in as many months. For the most part, though, Rowan is growing stronger and more curious about the world every day. We meet regularly with a physiotherapist, and we do daily exercises and stretches with him to make sure he’s progressing as best he can. Throughout it all, he remains a happy, giggly bundle of energy.