GREENFIELD — When Jason and Rhonda Trebley found out they were both carriers of cystic fibrosis, it was too late to turn back. Rhonda was already 32 weeks pregnant with twins.
Catherine and Clayton came into the world with a life-threatening genetic disorder that affects their lungs and digestive system, and a life expectancy of 14 years. For their parents – Rhonda, a paramedic, and Jason, a firefighter and EMT – the news was devastating.
But the family soldiered on.
“They told us not to treat them any different,” Rhonda Trebley said.
Today, the Trebley twins are 7 years old and going strong. And this weekend, they along with dozens of friends and family members will walk to raise awareness of the disease that affects an estimated 30,000 Americans.
The Great Strides walk, to be held Saturday at Beckenholdt Park in Greenfield, is a 5K event that brings together patients, their families and supporters for a day of fun to raise money to find a cure for CF. It is sponsored by the Indiana chapter of the Cystic Fibrosis Foundation.
Great Strides is the foundation’s largest fundraiser, with events held at about 600 locations nationwide. Eleven walks are held each year in Indiana. In 2013, they represented close to 2,500 people walking in support of finding a cure for CF and raised $690,000.
Since 2004, Greenfield’s walk has raised $316,963, said Jessica Baker, development manager for the Indiana chapter of the Cystic Fibrosis Foundation.
Baker said she’s expecting around 200 people at this weekend’s walk, which she described as a celebration for CF patients and their families.
It’s also a time to celebrate dollars raised, as the CF foundation receives no government funding.
“It’s really a grassroot type of foundation,” Baker said. “We rely heavily on … our local support.”
The Trebleys like knowing they’re a part of that effort. This year, the local walk has adopted a theme, “crazy for a cure,” and walkers will dress in outlandish costumes to draw more attention.
In just the past few years alone, research for Cystic Fibrosis has come a long way.
The twins’ life expectancy today is 38, more than double what it was when they were born.
They still take medication and undergo regular breathing treatments to treat excessive mucus in their lungs. For 30 minutes each day, they strap on vibrating vests that help shake loose the buildup that otherwise could suffocate them.
They get a break from the vest treatments twice a year – Christmas and their birthday. It’s a strict routine, Jason Trebley said, but it is teaching the twins they are responsible for their own health.
“It’s not a choice,” he said. “They’ve cried. They used to kick and scream. We can’t be non-disciplinarians.”
The twins adhere to a medication schedule, but they are otherwise happy, normal kids.
The Sugar Creek Elementary first-graders are active in sports, partly by choice and partly at the insistence of their parents, who know keeping them active is critical to maintaining strong lungs.
This weekend, the Trebleys will reunite with those who understand their challenges best.
Each year, the walk brings together a unique community.
“We’re just all like a big family,” Rhonda Trebley said. “Everybody knows what’s going on – if somebody gets admitted to the hospital or if somebody’s sick.”
The Trebleys hope that if CF research continues to progress, the twins’ long-term prognosis will continue to improve.
Meanwhile, they’ll continue to encourage their children to live their lives like anyone else their age.
“We don’t want this to define them, and we don’t want them to think that it defines them,” Jason Trebley said. “Yes, it’s something we’ll deal with, but it’s not who you are. Don’t let this be something that’s going to hold you back.”
IF YOU GO
The Great Strides walk is Saturday at Beckenholdt Park The walk is free and open to the public. Donations will be accepted at the 9:30 a.m. registration. The walk begins at 10:30 a.m.
ABOUT CYSTIC FIBROSIS
Cystic fibrosis is a life-threatening genetic disease that primarily affects the lungs and digestive system. It is caused by a defective gene that causes the body to produce thick, sticky mucus. The mucus clogs the lungs and leads to serious infections. It also limits pancreatic function, which means the body isn’t able to break down food and absorb vital nutrients.
In the 1950s, few children with CF lived to attend elementary school. Since then, progress in understanding and treating CF has led to improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Source: Cystic Fibrosis Foundation