KANSAS CITY, Mo. — Every breath they take puts a strain on their health.
A reported 70,000 people across the globe live with Cystic Fibrosis. That includes an inspiring young man from Kansas City’s Northview Elementary School, who comes from a family determined to fight back.
Now, 7-year-old Erik Johnson is being recognized as Kansas City`s Cystic Fibrosis Foundation’s Great Strides Ambassador for 2019.
At Northview Elementary, everyone’s aware the first-grader has Cystic Fibrosis. But to look at Erik, or “Bubba” as his family calls him, you’d never know anything was wrong.
The Fortnite fanatic demonstrated for FOX4 News’ cameras his Fortnite dances, which were entertaining and on point.
But “Bubba” can’t always find the energy for a dance. Sooner or later, he has trouble breathing.
Laura Johnson, Erik’s mom, said her son was diagnosed at six months. He requires breathing treatments and a special diet to live with this life-threatening genetic disease.
Studies have shown many Cystic Fibrosis patients don’t live to see their 40s.
Erik said he also needs a steady diet of enzyme supplements to aid his stomach in digestion of food.
“Outliving my son is the number one fear that was going through my mind at the time,” said Laura Johnson, a mother of two. “It’s also the number one thing that’s on my mind each and every day. Each day is different with this disease.”
On May 11, Erik Johnson will cut the ribbon to begin this year’s Cystic Fibrosis Walk in Kansas City. Erik’s family and friends will walk and comprise a squad called Bubba’s Breathe Team. That’s scheduled for 10:30 a.m. at Crown Plaza. There’s more information on this page.
“It makes me feel really happy since I’m not the only one who has CF,” Erik said.
The North Kansas City School District is encouraging its employees to get involved. Jeans for Genes, a special promotion, will allow staff members and faculty to wear blue jeans to school this Friday, so long as they’ve donated.
“It makes me feel super happy because I’ve never gotten to be an ambassador,” Erik said, smiling.
“We’re not going to stop. We’re going to keep fighting for a cure. We’re going to give him the best life possible. We’re going to continue to live each day as if it were our last,” Laura Johnson said Friday.
She said the family couldn’t do all of this without the support of the public and their school.
In Bubba’s opinion, the best part of the upcoming walk will be seeing so many other families who understand Cystic Fibrosis.
