This family's cystic fibrosis fight is personal

BELLEVUE Fraternal twins Nolan and Logan Hartman are more than just brothers -- they're part of a fa
Sandusky Register Staff
May 24, 2010

 

BELLEVUE

Fraternal twins Nolan and Logan Hartman are more than just brothers -- they're part of a family searching for a breath of fresh air.

At 10 months old, both boys have bright blue eyes, blond hair and the start of toothy grins.

As they play together on their family's rug, you'd never guess one of the speed racers on elbows and knees not only inherited the "Hartman chubby cheeks," but was diagnosed with a life-threatening genetic disease.

"Logan has cystic fibrosis," mother Jennifer (Lewis) Hartman said. "In an ultrasound my doctor noticed there was a blockage in his intestines. We knew for certain it was CF after he was born."

Jennifer delivered the twins Oct. 1. Logan, who wasn't breathing and suffered a bowel obstruction, underwent surgery the next day.

Surgeons cut 111/2 inches of his intestines out and gave him an ostomy bag to collect his body wastes, said his father, John Hartman. He had a second surgery to remove it.

A little more than two months later, he suffered another bowel obstruction and was rushed to the emergency room, where he endured the same corrective surgery he received the day after he was born.

"When the doctors told us, at first we had no clue what (cystic fibrosis) was," Jennifer said, twisting the baby blue "breathe easy" band on her wrist.

"No one in our family had it. We didn't know what is was, what it meant."

According to the Cystic Fibrosis Foundation, the disease affects the lungs and digestive system of approximately 30,000 children and adults in the U.S.

A defective gene causes the body to produce unusually thick, sticky mucus that clogs the airways and leads to lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

The disease occurs in one of every 3,500 live births. More than 10 million Americans are unknowing, symptomless carriers of the gene.

"We found out we're carriers of CF," Jennifer said. "Nolan is also a carrier."

After spending Halloween, Thanksgiving and most of the Christmas holiday in the hospital, the Hartmans were told they could finally bring their baby boy home.

Logan's daily routine is like any other children his age -- but he also requires 9-10 medications including enzyme replacements and calorie boosters in his applesauce, claps on the front and back to help clear his lungs of the thick mucus, and four breathing treatments.

"It was hard at first, not having someone around to help us," Jennifer said. "The nurse had shown us what to do, so after a little while, we caught on. Now it's routine."

Logan's height and weight are right on track for his age, and the Hartmans said he is only a few weeks behind his brother developmentally.

"At first they told us he would need physical therapy because he had been laying still in a bed for four months," John said. "But he's doing great. Up until a week and a half ago he was scooting on the floor. Now he's crawling everywhere and pulling himself up."

Approaching his seventh month of being out of the hospital and with four surgeries under his diaper, Logan's future outlook remains bright.

Thanks to research funded by generous donors, the average life expectancy for people with the disease is 36.5.

Though the median age has doubled in the past 25 years, there are still drawbacks, including the inability to have children naturally, asthma and the risk for adult diabetes.

"We're quite fortunate," Jennifer said. "He was born at a great time because of all the medical advancements."

The Hartman's insurance company has been helpful, and they've met several area families who are fighting the same battle.

"Everyone's been so wonderful," Jennifer said. "Our families are great promoters, and our caseworker consistently checks in. The families we've met are a big support, because they've went through it. We're like a little community. We're a loud group trying to get the word about CF out."

After years of avid fundraising for the American Cancer Society, the Hartmans took time off when Logan was diagnosed and switched causes to help in the fight to find a cure for their son's disease.

"We can't imagine not doing what Logan needs to ensure he leads a healthy, normal life," Jennifer said. "We personally do not benefit from these fundraisers. We're just trying to get the word out to as many people as we can."

"We're always interested in new fundraising ideas," John said. "We're open to anything we can do representing the foundation."

Getting ready for the upcoming football season, the proud father already plans to buy Dallas Cowboy gear for the boys and teach them the concept of cheering for touchdowns.

"Logan will be able to lead a normal life," he said. "As long as we follow these preventive methods and take care of him as he needs to be while he's young, and he takes care of himself well when he gets older, he'll be able to do whatever he wants to do."

Three ways to help

What: First annual Cystic Fibrosis Poker Run

When: Aug. 9

Where: Roeder Harley Davidson, Sandusky

Time: Registration at noon, last bike out at 2:30 p.m. ending at Shifter's Bar and Grill, Sandusky, at 5:30 p.m.

Contact: 419-483-7848

What: Sam's Club First Annual Car Show with 50/50 raffle

When: August 17

Where: Sams Club, Sandusky

Time: 10 a.m. to 4 p.m.

Contact: 419-626-6563

What: 9 hole, four person golf scramble

When: August 24

Where: Twin Lakes Golf Course, 100 Decker St., Bellevue

Time: Registration 8-8:30 a.m., shotgun at 9 a.m.

Cost: $25/person

Contact: Bruce Baker 419-499-2511