BLACKFOOT — Bingham County has shown itself as a community that rallies behind special causes and special needs whenever they arise.

The fight against cystic fibrosis (CF) is one of those causes. It’s a a hereditary disease that affects the lungs and digestive system, with the body producing thick, sticky mucus that can clog the lungs and obstruct the pancreas. CF can be life-threatening, and people with the condition tend to have a shorter-than-normal life span.

It’s a disease that has reached around the county. It’s a disease that brings a rallying cry every July with the Wolverine Canyon Marathon, which raises awareness of CF and helps raise money for research into ultimately finding a cure, highlighting one person each year in the county who battles CF.

This year, with help from donors and local participants including sponsors and the runners themselves, the marathon raised $14,863.44. The VanOrden family in the Thomas area received a check for $7,431.42. They plan to donate a portion of of that to cystic fibrosis-related causes, use some of the funds to pay off medical expenses for their 4-year-old son, Taylor, who has CF, and put the remaining money in a medical fund for Taylor to use for future medical expenses.

In 2017, Frannie Baumgartner Crumley of Blackfoot was highlighted, turning 40 that year, having a double lung transplant to extend her life. Emersyn Drollinger, a young Shelley girl, was highlighted in 2018. She was diagnosed with cystic fibrosis as an infant. Taylor VanOrden started showing signs of the disease just a couple of days after being born at Eastern Idaho Regional Medical Center.

Frannie — daughter of Alice and Gary Baumgartner — lost a sister, Julia, to the disease.

The disease and the daily treatment that goes with it is all that Taylor has ever known, aside from the love and support of his family and friends. He’s become so accustomed to the daily ritual, months short of his fifth birthday, that there are things he does on his own to help himself, such as strapping on his own percussion vest which is needed at least twice a day, used to relieve the mucus that can build up in the body and become thick and sludgy — much like overused motor oil in a car’s engine, with life-threatening results if left untreated.

CF AWARENESS

“We were in ignorant bliss for the first 36 hours after Taylor was born,” his father Jeff says.

A couple of days after he was born, Jeff and Taylor’s mother, Lyndsey, knew there were complications.

That was when he threw up greenish mucus. He hadn’t had a bowel movement in 36 hours, finding blockage in the small intestine. On day two after being born, Taylor was Life Flighted to Primary Children’s Medical Center in Salt Lake City.

At the time, doctors were unsure whether it was CF or an intestinal disorder. Then came the family history. Neither parent had known there had been CF in the family until Lyndsey was told that her father had a cousin who died of CF at age 18, an average lifespan for people with CF back then.

There are no outward symptoms at all. It’s known as an “invisible disease,” and it’s a disease he will likely fight his entire life. But there is still hope that positive steps in funding and research will improve quality of life if not upholding the mantra of the Cystic Fibrosis Foundation (https://www.cff.org/): “We will not rest until we find a cure.”

It’s a mantra the VanOrden family lives with every day — for Taylor.

According to the CFF, in people with the disease, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.

In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. Minimizing contact with germs is a top concern for people with CF.

In the VanOrden home, having two school-age children in Taylor’s sister Emma, 9, and brother Tommy, 7, who are exposed to germs on a daily basis means extra caution on a daily basis is required, along with avoiding germs from anywhere. Emma and Tommy have both been tested for CF and are clear.

According to the CFF, signs of CF can include very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections including pneumonia or bronchitis; wheezing or shortness of breath; poor growth or weight gain in spite of a good appetite; frequent greasy, bulky stools or difficulty with bowel movements; and male infertility.

A CLOSE-KNIT UNIT

Frannie Baumgartner Crumley calls younger CF fighters “{span}Cyster’s and fiBro’s,” She’s hoped for a cure to be found, so that one day the fighters will be {span}able to take one pill and be cured of CF.{/span}{/span}

{span}{span}Frannie stands as an inspiration to families of those dealing with CF, and there is a tight bond between those families. It’s there for support, to keep up the fight and the drive.{/span}{/span}

{span}{span}”There’s quite a few families around here who have it,” said Lyndsey, who Jeff says is highly involved in a CF advisory board that meets every week. The support they’ve seen with the marathon has been a very humbling experience, they said, seeing the community rally together.{/span}{/span}

{span}{span}”Frannie is incredible. She’s lived into her 40s,” Lyndsey added. “Frannie reminds me of what Taylor will be. She has been a role model. She’s given us hope.”{/span}{/span}

The goal that Frannie’s had of getting down to a one-pill cure sounds much better than the 13 maintenance medications Taylor must take daily now, with some of them being adult-sized tablets. One of those medications, Orkambi — an oral granule — costs around $300,000 per year. Taylor has to take that twice a day, and it’s delivered in a box keeping them supplied four weeks at a time.

With the medical coverage the family is lucky to have, the family has a copay of $45 a month for Orkambi.

“It does cause anxiety,” Jeff said.

The VanOrdens say they have a good medical plan, but premiums keep rising substantially. They meet their yearly deductible by the end of January. The government provides no funding for research, which leaves donations through the foundation and efforts such as the Wolverine Canyon Marathon.

“The foundation is pushing hard for a cure,” Lyndsey said. “It’s making substantial progress.

“There’s something about the CF world. There are a lot of passionate people.”

Part 1 Sunday: A look at the “CF world.”

Part 2 Tuesday: A look at Taylor VanOrden.

Part 3 Wednesday: A look at another CF fighter.