MARIETTA - Imagine trying to take a deep breath while pinching your nose closed and breathing through a straw.
For Marietta resident Casey Jo Higgins this is a daily reality.
With only 25 percent lung function and battling Cystic Fibrosis, a life-threatening genetic disease that attacks the lungs and digestive system, catching a deep breath for her is nearly impossible and oxygen is a constant companion to help her breathe easier.
Photo by Amanda Nicholson
Casey Jo Higgins, center, 26, of Marietta, is battling Cystic Fibrosis. She sits with her grandmother, Jo Ann Legleitner, 71, of Marietta, and aunt Kelly Legleitner, right, 46, of Belpre, Wednesday afternoon.
Photo by Amanda Nicholson
Casey Jo Higgins, far right, 26, of Marietta, looks at a small pond with cousins Emily Stevens, 7, far left, Haliee Stevens, 5, left, and Hadin Stevens, 6, right, on Wednesday. Higgins is battling Cystic Fibrosis and is in need of a double lung transplant.
"It wasn't bad as a kid," said Higgins, 26. "I always did treatments, but I didn't have to be hospitalized until I was 16."
She said the decline since then didn't happen all at once, but gradually. Despite that, it's been an adjustment.
"Things like shopping, I look around for a place to sit down because I get so tired easily," she said. "If there's an incline I'm out of breath at the top of it, or I stop halfway to get a breath...I did a ride in the (Belpre Homecoming) parade on a horse and paid for it. I was pretty sick the next few days."
If You Go
* What: Spaghetti dinner benefit for Casey Jo Higgins.
* When: Starting at 4 p.m. Saturday. Dinner will be served at 5 and a live band starts at 8:30.
* Where: K of C Hall on Ohio 676, near Churchtown.
* Cost: $15 at the door.
* T-shirts and bracelets for Casey Jo may be purchased by contacting Kelly Legleitner at 525-0162.
* To make a donation: Mail to Breathe Easy 2014, c/o Kelly Legleitner, 397 Roberts Drive, Belpre, Ohio 45714; a bank account is also set up at Settlers Bank, 115 Third St., Marietta.
* On Facebook: Breathe 2014 Easy.
About Cystic Fibrosis
* CF is a life-threatening genetic disease that attacks the lungs and digestive system.
* An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
* About 1,000 new cases of CF are diagnosed each year.
* More than 75 percent of people with CF are diagnosed by age 2.
* Nearly half of the CF population is age 18 or older.
Source: Cystic Fibrosis Foundation.
Higgins takes medications, is on IVs and has a vest that fills with air and vibrates to help clear her lungs.
Despite her illness, she is still able to do many of the things she loves, like spending time with family and her boyfriend and going horseback riding.
Higgins' aunt, Kelly Legleitner, 46, of Belpre, said the doctors acknowledged Higgins doesn't fit into a classic CF category.
"Usually those with CF are so sick and Casey never was," she said. "(Many) kids with CF don't make it to their teens. Her friends never knew (she was sick)."
Higgins played softball, basketball and swam as a child.
She is waiting to be put on a lung transplant list, which she said will hopefully be soon, but affording the $800,000 double lung transplant won't be easy.
"We have almost $40,000," said Legleitner.
The money has been raised through necklace, bracelet and T-shirt sales as well as benefits including ATV rides, motorcycle runs and BINGO.
The T-shirts have gone all over the country, said Legleitner.
"It's amazing to see these pictures come in (of people with Casey's shirts)," said Legleitner. "We've sent them to Delaware and Alaska, Texas, Florida, North Carolina, Michigan, Arizona. They're just everywhere. It's just unreal."
A benefit for Higgins will be held this weekend at the K of C Hall on Ohio 676, near Churchtown. The spaghetti dinner will cost $15 at the doors, which open at 4 p.m. The live band will perform at 8:30 p.m.
"There's a country store," said Legleitner. "There's going to be a gun raffle. There is a kids 2014 125 Tao Tao ATV (and) numerous hand-made items (to auction off)."
Higgins said the support is overwhelming.
"I'm extremely blessed and grateful for everything," she said.
Legleitner said Higgins' quality of life will improve drastically after the transplant.
"She'll be up to 100 percent function," she said.
Higgins said she's hopeful.
"I'm just waiting to see what it feels like to breathe normal," she said. "I'm waiting to see how much of a difference I'll see."
Legleitner and Higgins said that importance also needs to be on those who are donors.
She's already set some post-transplant goals, said Higgins.
"Eventually I want to learn to barrel race on a horse," she said. "I don't know about competing wise, but just to do it by myself. I don't know how to be well because I've lived sick for so long. It's going to be easier, I hope, to live."