Hon. Robert Black: Honourable senators, I rise today to highlight epilepsy awareness efforts, and more specifically, SLC13A5 epilepsy. As many of you may not be familiar with this condition, I would like to take this opportunity to share my family’s recent epilepsy story.

On June 4, 2021, we welcomed our third grandson, Rowan Cameron Black, into our family. While Rowan’s birth was a week earlier than expected, he arrived into the world a beautiful baby boy. However, we soon discovered he was dealing with frequent and serious seizures while still at Guelph General Hospital. We would later learn this was one of the first signs of SLC13A5 epilepsy.

At that time, we had no idea what was going to happen. Fortunately, the doctors at both Guelph General and McMaster Children’s Hospital provided the best possible care to Rowan and his parents during that stressful and uncertain time.

This was the first time our family had ever dealt with complications during the birth of a child or epilepsy itself, and, as I am sure many of you know, neither is an easy feat to handle. According to the Canadian Epilepsy Alliance, almost 260,000 Canadians have epilepsy. In fact, including Rowan, currently there are fewer than five officially diagnosed individuals in Canada with the relatively new disease SLC13A5.

While Rowan has had countless seizures, he has also received excellent care from the many wonderful medical professionals who have attended to him and from epilepsy support services, such as the TESS Research Foundation, which was founded to improve the lives of those affected by SLC13A5 epilepsy.

The TESS Research Foundation, while based out of the United States, works globally to support those diagnosed with SLC13A5 and their families. Some of you may have noticed the bracelet I wear, acknowledging Rowan as a TESS Superhero. I am proud to support our grandson and the foundation’s efforts in increasing awareness about this severe neurological disorder.

Honourable colleagues, epilepsy awareness efforts take place throughout the year around the world. For example, International Epilepsy Day takes place in February. We in Canada mark Epilepsy Awareness Month in March with Purple Day, the U.S. raises awareness in November, and the U.K. recognizes the condition in May.

With that being said, I chose to highlight epilepsy and SLC13A5 this week after Rowan was taken by air ambulance to Victoria Hospital in London, Ontario, following his most recent 45-minute-long seizure earlier this week. I hope when the time comes in March, many of you will choose to wear purple with me on Purple Day as we mark Epilepsy Awareness Month in Canada.

At this time, I would like to give a shout-out and thank the teams at Guelph General Hospital, McMaster Children’s Hospital, Groves Memorial Community Hospital, Victoria Hospital, the TESS Research Foundation and Ronald McDonald House for continuing to serve and support families in communities across Canada and beyond. I know it is appreciated by countless families, including my own.

Thank you, meegwetch.