Matthew Comeaux, left, high fives Mathan Doiron at the North Lewis Elementary event in honor of National Tuberous Sclerosis Awareness Day. Comeaux, 13, was diagnosed with tuberous sclerosis when he was 1 year old.

Julie Comeaux didn’t want to tell her son about the disorder that has caused Matthew, 13, to have tumors on his brain, kidney, both retinas and face. She said she really didn’t know why.

“I think I was trying to shelter him from the worry of what’s going to happen to him,” the mother of four said.

Matthew, a sixth-grader at North Lewis Elementary School, was diagnosed with tuberous sclerosis when he was 1. The genetic disorder causes nonmalignant tumors to form primarily in the brain, but also on almost any organ, according to the Tuberous Sclerosis Alliance.

Since she has begun learning more about her son’s diagnosis and advocating for him, Comeaux has begun to tell Matthew more about what separates him from his peers.

“We’ve been told to tell them everything about their disorder because they need to know why they’re different, and that makes perfect sense to me,” she said.

Comeaux is the vice chair for the Tuberous Sclerosis Regional Alliance for the Delta Region, which consists of South Louisiana and Mississippi, and she is the educational liaison for the Tuberous Sclerosis Alliance. She also has rallied in Washington D.C., which encouraged her to localize the issue.

Comeaux approached North Lewis Elementary Principal Tim Rosamond about having an event to honor National Tuberous Sclerosis Awareness Day. Rosamond was on board with the idea, he said.

“We wanted to do it for Matthew and for her,” Rosamond said. “We think it’s important to support our students any way we can. Despite the hectic time of school year we said absolutely we wanted to do something.”

Matthew played with his friends, mingled with his teachers and enjoyed ice cream treats with fellow students Thursday at North Lewis Elementary during the event.

Blue Bell donated 400 ice cream sandwiches for students to enjoy during an extended recess break, and Comeaux brought popsicles for the students. They also were allowed to wear jeans if they paid $1. The school raised nearly $350, all of which will be donated to the Tuberous Sclerosis Alliance.

Rosamond said he does not know if Matthew’s peers fully understand what makes him different, but he said events like that are key to opening the discussion about acceptance.

“For the first time they’re hearing tuberous sclerosis. It’s a tough thing to say and the kids don’t really understand what it is, but if nothing else we’ll generate questions about it,” he said. “It gives the kids an understanding that everyone is unique and everyone is different for a reason.”

Parents have expressed interest in the event, Comeaux said, and her family has been excited about it. She said Matthew knew it was a celebration for him and he was excited to be a part of it before he transitions to middle school next year.

“My hope is that the kids would carry this with them and they would help guide him in his new world. And I hoped the younger kids would learn to accept (those) who may be different from them for one reason or another,” she said.

Comeaux said she hopes more people throughout Iberia Parish become aware of the disorder and learn more about it.

“There is nothing that I ever wanted more for him than to have the awareness of tuberous sclerosis and the acceptance of being different, but accepting him for what he can do and not what he can’t do,” she said.