A Shawnee Mission middle schooler with multiple hereditary exostosis has organized a concert to raise awareness of the genetic disease.
The MHE Bone Disorder Awareness Concert takes place at 7 p.m. tonight at Asbury United Methodist Church, 5400 W. 75th St., Prairie Village.
Matthew Schnake, an eighth grader at Westridge Middle, is organizing the concert as his Eagle Scout project with Troop 257.
Multiple hereditary exostosis, or MHE, is an inherited disorder of bone growth that results in bone tumors similar to bone spurs. Schnake has had about a dozen surgeries in the past four years to remove the tumors. He’s 13 years old.
Schnake said he often has to explain how the disorder affects his day-to-day life because it sometimes goes unnoticed by those around him who may not know about it. He mentioned that it’s not very common, which explains why people may not understand it.
“One of the biggest things is that I can’t sit down without a chair; I can’t sit on the floor,” Schnake said. “I have to explain that to every single teacher all the time, especially substitute teachers. I just don’t like explaining it to everyone.”
Schnake said he plans to share information about the bone disorder and other invisible disabilities at the concert tonight.
“He often gets frustrated by explaining to people why he can’t do things,” said Dawn Schnake, his mother. “Because looking at him, you wouldn’t know that there was anything wrong.
“What’s nice is this is a chance for him to get out publicly — probably to most people we know and more — what this is.”
The concert will feature a variety of performances by professional musicians in Kansas City.
Schnake will also be accepting care package items for the MHE Coalition to distribute to children and adolescents having surgery. Item suggestions include craft and activity kits, puzzles, card games, science toys, DVDs and puzzle books.
Schnake added that he also plans to prove that he doesn’t have to attend summer camp every single year to earn his Eagle Scout rank.
The Schnakes recently wrapped up another Eagle Scout project in the family. His older brother, Andrew, just completed his own project to create a quiet room at Westridge for students to find respite when dealing with anxiety or stress.
“We think it’s great that they’re doing projects that highlight their individual disabilities and really proud,” said Dawn Schnake about her sons.
“I think it’s neat because it makes the projects very personal for them,” added John Schnake, their father.