Valeriya & Yaro's story

Lissencephaly & Lennox-Gastaut syndrome

Patient Voice spoke with Valeriya Demydenko about sharing her son Yaro’s health journey on social media, and why she maintains a transparent dialogue about the difficult and joyful moments of their life.

East Gwillimbury, ON

When my husband first suggested that I post on social media about life with our son Yaro and his lissencephaly, my immediate response was: ‘No, that’s a stupid idea.’

But then I got to thinking about my own ableism. Well, first I had to learn this word, ‘ableism.’ And then I started thinking about my Russian-Ukrainian background and how, where I’m from, there’s a cultural norm that children with any disability are hidden away. Certainly not talked about publicly. It made me realize that I was guilty of carrying this limiting and harmful perspective forward, when instead I could be pushing back, making a positive change.

“…every day we spend with Yaro is purposeful and joyful. Why would we not share that?”

The hardest part was admitting to my husband that maybe his idea wasn’t so stupid after all.

Yaro’s lissencephaly and Lennox-Gastaut syndrome are such a huge part of our lives. There are uncontrollable seizures, there’s progressive disability, and there are terrifying statistics about life expectancy. But there’s also rapidly advancing research. Through it all, we make sure that every day we spend with Yaro is purposeful and joyful. Why would we not share that?

I love that I can show people the joy we experience, but also how hard we have to work for it. We went to Cyprus this summer as a family, and travelling to Europe with a wheelchair is insane! We wanted to swim in this beautiful blue lagoon, but of course there was no accessible access. My husband had to physically carry Yaro most of the way there. It was an ordeal. But then we were in the water, making these incredible family memories, and it was totally worth it. The beautiful moments are so beautiful, but you have to fight so hard for them. They never come for free.

My big hope is that people will see that Yaro is more than the picture they might build in their mind when they hear the list of his health issues. Yes, he has dozens of seizures every day. Yes, he’s in a wheelchair. But behind it all, he’s just a bubbly little five-year-old boy. He has a personality. He has opinions. He has friends. He has things that he loves. He loves to laugh. He loves blueberries. He loves his brother. He loves life.”