By Starrla Cray
DELANO, MN There’s no cure for cystic fibrosis yet, but by funding Cystic Fibrosis Foundation research, the Nelson family of Delano hopes it will be discovered sooner rather than later.
A Great Strides fundraising walk is planned at Delano High School Thursday, April 12 at 4 p.m., in conjunction with the school’s spring 5K walk/run/roll for wellness.
The public is encouraged to walk, run, bike, or skate to the finish line, where there will be food, water, and prizes.
Before the walk, there will be a drop-off site for donations. There is no minimum donation required.
Tens of thousands of children and young adults in the US are affected by cystic fibrosis (CF), a chronic genetic disease of the lungs and digestive system.
For Scott and Carol Nelson, this condition hits close to home.
“Two of our three kids have it,” Carol said, adding that she and Scott had no indication that they were carriers before they had children.
“I had all three kids before we found out,” she said.
Their oldest, Callie, is now a senior at Delano High School.
Since she was very young, Callie had recurring sinus infections and experienced frequent coughing. However, doctors attributed it to other causes, and hadn’t considered CF.
Callie’s symptoms seemed to worsen about 8.5 years ago, which happened to be the same time the family moved to a country property in rural Delano.
“We thought it was possibly allergies that were getting worse from being in the country,” Carol said.
However, a CT scan showed abnormalities in Callie’s sinuses, which is an indication of CF.
After she was diagnosed, the Nelsons’ other two children were also tested.
Sawyer, who is now a freshman, tested negative; but his brother, Spencer, tested positive.
Spencer, a sixth-grader, was 4 years old when he was diagnosed.
To manage the disease, both Spencer and Callie take several medications and use chest physical therapy (CPT). They also take vitamins, because CF inhibits the absorption of nutrients.
Despite the challenges of CF, Spencer loves playing baseball; and Callie plays soccer, rides horses, and works at Pizza Ranch after school.
In the fall, Callie plans to attend St. Cloud State University.
She and her family hope that, someday, CF will no longer be part of her life.
“They’re making definite progress in finding the cure,” Carol said.
According to the New York Times, the first drug that treats an underlying cause of cystic fibrosis was approved by the Food and Drug Administration in January.
The drug (Kalydeco) counters the effect of one mutation of the cystic fibrosis gene, G551D. About 4 percent of people with cystic fibrosis have this type of mutation.
Spencer and Callie have the most common mutation, delta F508.
To register for the Great Strides walk, or for more information, contact Delano school nurse Jane Larter at (763) 972-3365 ext. 2022, or call Carol Nelson at (763) 972-2971.
Those who are not able to attend the walk but would still like to contribute can mail a check to Scott Nelson, 8230 Calder Ave SE, Delano MN 55328. Make checks payable to the “Cystic Fibrosis Foundation.”