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Hants’ Faces Friday – Janet AuCoin LeBlanc

Janet AuCoin LeBlanc holds up a treasured family photo of her sons Nathan and Noah. Nathan passed away in 2016 and loved to be close to his little brother.
Janet AuCoin LeBlanc holds up a treasured family photo of her sons Nathan and Noah. Nathan passed away in 2016 and loved to be close to his little brother.

WINDSOR, N.S. — Faces Friday is our online feature highlighting members of our community: their strength, challenges and humanity.

In 2016, Janet AuCoin LeBlanc's eldest son, four-year-old Nathan, went to sleep and never woke up. He died due to SUDEP — sudden unexplained death in epilepsy.

At just six months old, Nathan was diagnosed with Dravet Syndrome — a very rare form of epilepsy. Ever since then, AuCoin LeBlanc has been raising awareness of the condition. June 23 holds a very special place in her heart: it's Dravet Syndrome Awareness Day. She also organizes and participates in an annual awareness walk in Windsor (http://dravetwalkforthekids.kintera.org/faf/search/searchTeamPart.asp?ievent=1171027&lis=0&kntae1171027=24789E3324F8411F83FB151A4991E861&team=6952494 to donate or sign up) and provides professionals with information pertaining to the syndrome.

AuCoin LeBlanc, who grew up in Valley, just outside Truro, attended Acadia University to become a teacher. After teaching out west and in Digby, she moved to Windsor in 2013 and began her career at the Hantsport School. Nathan was born in 2011. His younger brother, Noah, was born in 2013. AuCoin LeBlanc says she wants people to better understand the condition and take a lesson from her son's positive, giving nature.

 

“It's not a cookie cutter disease. It does not respond to one type of treatment. It doesn't respond well to most treatments. It's hit and miss as to whether or not a particular medication will work or will not work. An awful lot of these kids — they're all diagnosed early on in life, before the age of two — and it's hit and miss, experimental. Let's try this one, let's try that one... As it stands, there is no cure for it, there's no set treatment for it. There's nothing that definitively works to control the seizures. And it can be anywhere from a seizure a week to hundreds in a day. There's multiple different types of seizures.”

With neighbourly support, Janet AuCoin LeBlanc installed a special butterfly garden at her house in Windsor. Butterflies and the colour purple are often associated with epilepsy, which her eldest son, Nathan, had a rare form of. Nathan and her younger son, Noah, used the sandbox that the purple ribbon is situated on.

 

“Nathan was an amazing little boy. He lit up a room. He was constantly happy. Always smiling. He naturally gravitated toward anybody who sort of seemed down in the dumps or not necessarily engaged in what was going on. He'd go over and say 'hi' and make their day and make them smile. He loved to dance, loved to sing; loved to run and swim. He was just starting to master skating — it's a huge deal for balance issues — so I was very proud of him for that. He wasn't shy about trying. He loved reading, he loved music; he loved people.”

 

“He taught a lot of people patience — and just to stop and enjoy what was in front of you, see what was there, and not where you need to go. He's taught me. Having the experience of seeing through his eyes has helped me a lot in life and as well as a teacher. Being able to stop and see through the eyes of the students that I'm teaching and being able to understand and have that patience with them, to be able to say 'OK, where are you going with this, what are you seeing that I am not?' and enjoying the little things that they enjoy.”

Janet AuCoin LeBlanc shows off a framed photograph of her sons Nathan and Noah, and reflects on the good times they had together. Nathan died in 2016.

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