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Tysen Herken has no idea he was born with a fatal disease. No one looking at him would know, either. He smiles, plays and runs around just as much as any other 17-month-old.

But twice a day, for 20-minute increments, he's strapped into a vest that he cries to get out of, unaware it's actually extending his life.

Herken was diagnosed with cystic fibrosis when he was 10 days old. The diagnosis was made from the results of his newborn screening test.

Cystic fibrosis is a chronic and progressive disease that causes mucus to become thick, dry and sticky. The mucus builds up and clogs passages in the lungs, pancreas, and many other organs in the body.

In the lungs, cystic fibrosis causes respiratory problems when thicker than normal mucus forms in the airways and lungs.

Children with cystic fibrosis almost always have breathing problems and frequent lung infections. In the pancreas, the mucus blockage can interfere with normal digestive processes and increase the risk of infection.

Babies and children with cystic fibrosis might not be able to absorb nutrients from food and might have below-normal growth and development.

Tysen's parents, R.J. and Ingrid Herken of Bangor, were devastated when they heard the diagnosis. The news was especially shocking to them because their other two children, Jaden, 5, and Sarah, 4, were born perfectly healthy.

“I was in denial,” Ingrid said.

“A little denial and a little guilt,” R.J. added.

It wasn't until Tysen's diagnosis that the pair learned they're each carriers of the defective gene that causes cystic fibrosis. An individual must inherit the gene from each parent to have cystic fibrosis. Each time two carriers conceive, there is a 25 percent chance their child will have cystic fibrosis, a 50 percent chance the child will be a carrier of the gene and a 25 percent chance that the child will be a non-carrier.

R.J. and Ingrid's daughter Sarah is a carrier of the gene. Jaden is not.

The couple plans to tell Tysen's story and hopes to help raise awareness about cystic fibrosis as part of the 15th annual Blarney Party Challenge on March 4-5 at Charter Communications in Onalaska.

Tysen will be featured at the Children's Miracle Network fund-raiser.

The vest Tysen is strapped into twice a day is called Smart Vest. It is connected to a machine that pumps air into the vest causing a vibration of the lungs to help break up the mucus. The vest is only one of a number of treatments he must go through to be as healthy as possible.

With every feeding and snack he takes Creon5 capsules that are broken up and sprinkled onto the food or into the bottle he's going to take. The enzyme supplement helps make it possible for him to digest his food and break down the fat and calories.

He also takes as many as eight treatments a day of Albuterol or DuoNeb, an inhaled medication from a nebulizer to help him with his breathing and to help fight off infections.

Also from the nebulizer he takes treatments of Pulmozyme, which helps thin the mucus in his lungs.

Furthermore, he takes an inhaled antibiotic called Tobi to help prevent him from getting sick.

“He's been on probably 30 to 40 medications already,” Ingrid said.

Of course, none of the medications come cheap. The Tobi antibiotic alone costs the family about $3,500 a month. The Smart Vest cost $15,000.

Tysen is covered by medical insurance, which covers a lot of the medical bills. Much isn't covered, though, which is where CMN has helped out the family. They've provided food and gas vouchers and also helped fund the Smart Vest.

The vouchers came in especially handy during the first few months after Tysen's diagnosis when the family was making the 35-minute drive to a La Crosse hospital on a regular basis.

“Tysen spent the first year of his life in and out of the hospital with lengthy hospital stays, doctor appointments and numerous trips to the emergency room with breathing difficulties,” R.J. said.

He said Tysen being sick is both mentally and physically draining on him and Ingrid.

“Normal kids get sniffles or a cough, (Tysen) gets pneumonia,” Ingrid said.

“It sucks. It's never going to go away,” she said.

Still, the couple remains hopeful.

Managing to hide the sorrow they must have been feeling, the couple plainly said Tysen will probably need a lung transplant by his late 20s and has a life expectancy in the low 30s.

“But we're hoping there will be a breakthrough in medicine (before then)” R.J. said.

Hope keeps the family positive, as well as Tysen.

“Even though his life is filled with doctor appointments, medication and chest therapy, Tysen still manages to smile and make everyone's day a special one that he comes in contact with,” R.J. said.

AT A GLANCE

WHAT: 15th annual Blarney Party, a Children's Miracle Network fund-raiser giving people the opportunity to see and hear families' stories of how they've benefited from CMN. Viewers and listeners can bid on furniture, gift certificates sports memorabilia and more.

WHEN: 9 a.m. to 9 p.m. Saturday, March 4, and 9 a.m. to 3 p.m. Sunday, March 5.

WHERE: Charter Communications, 1228 12th Ave. S., Onalaska.

WATCH: The program can be seen on Charter Cable Channel 16.

LISTEN: The program can be heard on WLFN 1490 AM radio.

CALL: To place bids or make a pledge, call 781-8900 or 800-853-6889. To volunteer or donate an auction item, call CMN at 775-5345.