It was last December when Hayden’s body finally gave out.
Eight years old and 42 pounds, Hayden had been having health problems his entire life, but doctors and nurses chalked it up to severe asthma and allergies.
As Hayden was rushed to the emergency room at McLane Children’s Hospital Scott & White in Temple, doctors turned to his father, Eric Korsmos, and asked if his son had ever been tested for cystic fibrosis.
“He was really at the point of dying and had stopped producing red and white blood cells, so they tested for CF, and it came back positive,” Korsmos said.
Cystic fibrosis is a rare genetic disease that attacks the digestive and respiratory systems. The disease often causes sufferers to have trouble breathing, a suppressed immune system and other health problems, and it is difficult to treat.
“After we got the diagnosis, my wife and I started researching. We found (Kalydeco, a new medication),” he said.
Kalydeco only treats one of the 1,400 genetic variations of CF, so doctors told the Korsmos that the probability of Hayden having the specific genetic variation it treated was like winning the lottery, twice.
“It was New Year’s morning when we got the call that he had the gene, and we put him on the medication immediately,” he said.
Seventeen months later, Hayden has gained nearly twice his original weight, recovered the use of a third of his lungs and repaired some of the damage the disease did to his internal organs. He also has the active and energetic disposition of a child his age.
Hayden, along with several other children suffering from CF, will speak about their experiences with the disease at the Great Strides walk Saturday, which is hosted by the Central Texas Chapter of the Cystic Fibrosis Foundation.
Registration begins at 9 a.m. with the walk at 10 a.m. at Harker Heights Community Park.
The event is free to the public, and proceeds raised by walking team members, sponsors and other donors will benefit the foundation, which raises money to find a cure for the disease.
At first, Korsmos and his wife were hesitant to talk about their experiences because Hayden does not have to do as many lung treatments and take as many medications as others with CF.
But, Korsmos said, he wants to get Hayden’s story out there because people need to know research can help, and there is a cure, or several, out there somewhere.
Contact Courtney Griffin at firstname.lastname@example.org or 254-501-7559