Operation North Pole brings Christmas to seriously ill children
Ask Johnathan Suerth about the most challenging part of being unable to walk, and the 10-year-old Cary boy talks about the best part instead.
"I get to go to stuff like this," Suerth said Saturday in the ballroom at Rosemont's Donald E. Stephens Convention Center.
Volunteers for nonprofit organization Operation North Pole transformed the room into a winter wonderland for kids with serious and terminal illnesses and their families. The annual event began with nearly 70 families boarding a train at the Metra station in Des Plaines and riding to Crystal Lake. On the trip back, police officers, firefighters and residents cheered when the decorated train passed each stop.
Children and their families then headed to the convention center and walked through a long line of first responders, who knelt down and clapped as the kids entered the ballroom.
"These kids are fighting harder than we're fighting," Lake Zurich Fire Department Lt. Matt Kempf said. "They're the true heroes."
Doctors diagnosed Suerth at age 5 with Duchenne muscular dystrophy, a disorder that causes his muscles to deteriorate. Suerth's mother, Margo Davison, said most people diagnosed with the disorder don't live past age 20.
"In the beginning, it was very depressing," Davison said. "You don't even know what the point of living is anymore. You get angry and over time you learn to enjoy every possible moment that you can."
Suerth, who uses an electric wheelchair, enjoys making people laugh, filming YouTube videos and playing video games, she said. He won't make a Christmas list because he likes surprises -- though he did mention an Xbox One, Davison said.
If Santa doesn't bring the popular video game console, Suerth along with other kids at the event are in line for other gifts. Volunteers signed up to adopt gift lists for each child and purchased about $50,000 in presents, said Tim Crossin, treasurer for the organization.
"For some of these families that are coming in here, their child's diagnosis is already terminal," Crossin said. "They're not going to see another Christmas together. It's our job to make it special and create as many memories as we can."
Davison wants a cure for her son's disorder. The Food and Drug Administration has approved a medicine for children suffering through earlier stages, but researchers haven't developed a drug for people with progressed forms, Davison said.
"I'm hoping they find that before it's too late for him," she said. "If they can't, as long as he's happy that's all I could ask for."