By Jim Dayton
The Janesville Gazette
DELAVAN, Wis. — Firefighters who run into burning buildings when everyone else is running out are often considered heroic.
Staring down an incurable form of brain cancer with unshakable optimism and selflessness, well, that’s pretty heroic, too.
For 10-year-old Ryan Johnson of Elkhorn, a rare brain tumor has not stopped him from doing the things he loves and being the same upbeat, caring boy he has always been. Ryan got to share that joy with town of Delavan firefighters, police officers and EMS personnel in a ceremony Monday where he was named an honorary firefighter.
The ceremony was a surprise for Ryan. The family met Ryan’s cousin Nate Warrenburg, a firefighter with the town of Delavan, outside the station on Town Hall Road as the sunlight waned.
“Before we brought him to the doors, he looked around and just wanted to look at fire trucks,” said Warrenburg, who helped organize the event. “That was his first thing, thinking he was here to look at fire engines.”
Then Ryan was wheeled into a small meeting room and showered with applause from town police and fire and rescue personnel, some of whom were forced to stand because there wasn’t enough space to sit.
Firefighters, police officers and EMTs then lined up in uniform and saluted Ryan as he proceeded past and shook their hands. At the end of the line, he received a plaque and badge naming him an honorary firefighter with the town’s department.
Ryan’s diagnosis came last fall. Ryan has always had a slight lazy eye, but his left eye had begun to take a sharper turn inward.
“We thought, no big deal, it’s a lazy eye, we’re going to take him to the doctor and he’s going to be OK,” said his father, Jesse. “The doctor told us immediately (after an MRI) that they found a tumor on the brain.”
Ryan was diagnosed with diffuse intrinsic pontine glioma, a tumor on his cerebrum that affects his energy level, motor skills and ability to walk. No child has ever defeated the diagnosis, and the average length of survival is just nine months, Jesse said.
Ryan has made it nearly 10 months. His diagnosis came Oct. 26 of last year, a day his father recalled with ease.
“It’s a date I’ll never forget,” Jesse said. “It’s a day your world goes from great to nothing.”
The tumor reverted Ryan’s mental state to that of a 3-year-old, and he needs help eating and using the bathroom. Some days, Ryan sleeps for hours, having no energy to do much besides watch TV.
Other days, however, Ryan fights. About three weeks ago, he began using a wheelchair and could only walk with someone else’s help. But if he has the energy, Ryan will get out of his wheelchair, decline the helping hand and push himself to walk on his own, Jesse said.
The happiness on Ryan’s face Monday night gave no indication he was dealing with a life-altering illness. That’s nothing unusual for the boy who family members say has always worn a smile.
The reason Ryan loves firefighters is simple, but it provides a glimpse into the type of person he is.
“They save people’s lives,” he said while sitting in the back of a ladder truck.
Ryan, Jesse, his mom, Shauna, and his brother, Seth, were given a hero’s procession of fire trucks, ambulances and police cars around Delavan Lake. Ryan held a rope to control the ladder truck’s horn, and he was not shy about pulling it as lights flashed and sirens wailed.
Besides sounding the horn, Ryan also had full command of the truck’s siren and even worked the walkie-talkie, giving and receiving orders from his new colleagues.
Since being diagnosed, Ryan has gotten to indulge in all his favorite hobbies. He went to a supercross motorcycle event in St. Louis, where he received an autographed pair of glasses from racer Chad Reed. The family went deep sea fishing off the coast of Florida. Ryan even shot an 11-point whitetail buck in Rosholt, Wisconsin.
While all those experiences were cool, Ryan has gotten the most enjoyment out of giving to others. He gave his cousin Loralei, Warrenburg’s daughter, a pocket knife he received during a turkey hunt. Loralei treasures the possession, her dad said.
Ryan helped buy Seth a GoPro camera and has used his money to pay for basketball and football shoes for kids who can’t afford their own. Making others happy brings him joy, he said.
Jesse and Shauna plan on starting a foundation called Red Strong to help families whose children are diagnosed with cancer. The name is a reference to Ryan’s red hair and red football equipment while playing for Lake Geneva Youth Badgers.
For now, the parents are focused on helping Ryan, but they will dedicate more time to Red Strong once he passes. Ryan’s selflessness inspired them to do more for others, Jesse said.
The journey since Ryan’s diagnosis has been an “emotional roller coaster,” Jesse said. But he tries to stay positive for his son, whose optimism and smile haven’t faded.
“He’s here with us today. I’m going to have a time where I can grieve or I can be sad,” Jesse said. “But today is not that day. And hopefully tomorrow won’t be either.”
Ryan’s parents created a GoFundMe page last year to help raise funds for his medical expenses.