Two months after their 13-year-old son Tyler Wallace-Cohen died, his parents Jennifer Wallace and Eric Cohen did what their son would have wanted them to do and banished the mid-January darkness by filling their yard with glowing lights, inflatables and joy.
In the midst of the colourful display was the logo for Loeys-Dietz Syndrome, the genetic disorder that led to Tyler’s death in November 2024.
The family invited friends, classmates and neighbours to drive by the Toronto house and give a honk, or get out of their car and enjoy the lights display, take photos and share stories about Tyler. The special event was called Twinkling Tribute Hour for Tyler.
“We wanted to bring joy to others during the holiday season and shine a light on Tyler and the kind of kid he was,” said Wallace.
He was known for his infectious smile and cheering up those around him.
“Tyler would always champion for others. If someone was having a bad day or being bullied, he would always step in and advocate for that person,” said Wallace.
Tyler had no shortage of challenges himself. When Wallace was pregnant, the couple went to an ultrasound early on and found out there was a ‘laundry list of problems’ with their unborn child.
They decided to continue the pregnancy and hope for the best. After a difficult labour, Tyler was born and immediately whisked away by a medical team.
“In the middle of the night, Jen called me and said that he may not make it through the night, and I had to go to SickKids (Hospital),” said Cohen.
Tyler survived but this was the first of many dire medical situations that he would face throughout his life including 17 surgeries, four being major heart procedures.
He lived with Loeys-Dietz, a rare genetic disorder that affects connective tissue. It can cause aneurysms in the aorta and other arteries, as well as other abnormalities.
When he was born, there were fewer than 500 people worldwide with this diagnosis and he had one of the most severe cases the doctors had seen.
“We made it our mission that he was going to not just defy the odds but beat them,” said Wallace.
They tried to ensure Tyler did everything that other kids did including going to school, participating in extracurricular activities, and more.
“A cardiologist said to me, ‘we’re going to give him the best medical care that he can possibly have. Your job is to let him just be a kid,’ and so we did.” said Cohen.
They took family trips and tried to enjoy life as much as possible. One year they went to Niagara Falls and upgraded to the Presidential Suite.
“When Tyler found out, he was so happy and excited. He looked at me and goes, ‘Mom, we’re big ballers’,” recalled Wallace.
At one time, Tyler was followed by 18 different healthcare professionals. Tema Stein was Tyler’s osteopath. They first met when he was less than two years old.
“When he first came to me, he couldn’t bear weight on his feet. He couldn’t stand or walk,” said Stein.
She helped expand Tyler’s capabilities in different ways including introducing him to Kyoshi Dominic Moscone at the Northern Karate School.
“When I first heard about the medical issues he was going through, I was a bit skeptical. I was told to just meet him and right away he stole my heart,” said Moscone.
They started working together for just 10 minutes at a time because of his condition. They made their big goal to get up to an hour.
“His knees would buckle and he would fall over due to muscular imbalance. I would test his balance, push him over a bit. I would ask him if he fell and he would say no or that he almost fell. The almost fall was a huge accomplishment because it meant he could control that stuff,” said Moscone.
Before long, they were training together consistently every Saturday. They worked together for about seven years.
“He accomplished everything according to the same curriculum as everyone else,” said Moscone.
Just last year, Tyler got his black belt. According to Moscone, he never gave up no matter how difficult things were and his parents also played a big role in this major accomplishment.
“He’s a one in a million kid,” said Moscone, “He’s going to be deeply missed. He lived a short but meaningful life. He brightened the lives of everyone he came in contact with.”
Moscone attended the twinkle tribute hour with his sons last week.
“It was amazing. You look at his parents and his whole family and you can see why Tyler was as good as he was. They’re making this terrible thing into something fantastic. It’s just what they do,” he said.
On Nov. 5, 2024, Tyler had his 16th surgery, this time for his aorta. Just two days later, he had chest reconstruction surgery. He came home from the hospital and was recovering at home.
Shortly after, he wasn’t doing well and his parents took him back to SickKids.
“I was hoping it was just a panic attack and the pain was related to the surgeries. But when they hooked him up to the heart monitors, all hell broke loose,” said Cohen.
The doctors did everything they could to try and save Tyler one last time.
“The doctor came over and said there’s nothing we can do, your son is dying. Everyone just left the room and we were alone with him.” said Cohen. “It was the worst feeling because I knew he was gone.”
The couple said the holidays were an incredibly difficult time for them and their family but soon Wallace had an idea.
“Jen convinced me to put up the inflatables and then we started to expand it,” said Eric.
They started to get more inflatables donated to them and it just kept expanding. Eventually, the yard was filled with light and colour.
“We did everything we could to turn that darkness into something bright and fun because that’s what Tyler would have wanted us to do,” said Cohen.
At the tribute evening, they were joined by friends, family, community members, and even the police who flashed their lights and honked their horns in honour of Tyler.
“Tyler would have loved this and the world needs more kind, caring, and compassionate people like him,” said Wallace.
Proceeds from the event went to SickKids Hospital.
