A breath away from a cure: Team Nathan raising money for cystic fibrosis

By: By Chrysta Carroll - ccarroll@civitasmedia.com

BLADENBORO — Breathe in. Breathe out. In. Out. Again. Just breathe. For the average person, that 15-second process would occur over and over each day without conscience thought. Nathan Nance and his family, however, are all too aware of what a complex and fragile process it is.

Nathan, a 15-year-old West Bladen student from Bladenboro, has cystic fibrosis, a genetic disease affecting 30,000 people in the United States and 70,000 worldwide. Only manifested when both parents are carriers — which one in 32 Americans are, according the Cystic Fibrosis Foundation — the incurable disease can affect the pancreas liver, kidneys, and intestine, but it is mostly known for its effect on the lungs. People with cystic fibrosis have difficulty breathing and frequently contract lung infections.

Usually diagnosed at birth, the disease didn’t show up in Nathan until the age of 4, but every day since then has been a battle with his lungs. He rises between 5:30 and 6 a.m. every day, and proceeds to hook up a machine for high-frequency chest wall oscillation. Called the “vest machine,” the apparatus vibrates at a high frequency to loosen and thin mucus. While on the machine, he takes three different inhaled medications. Once off the machine, he huffs, or coughs, for 30 minutes, after which time he gets back on a nebulizer to decrease the chance of lung infections. Altogether, he usually spends four to six hours daily on treatment.

He also takes 20 pills every day.

“Some days are good, and some days are bad,” said his step-mother Tesla Nance. “If he has a good day, he can make it all the way through school and not have to go through treatment again until that night.”

In addition to breathing medications, Nathan also takes enzymes every time he eats anything that’s part of his 4,000-calories-per-day diet (only half of which his body will actually absorb). Once a month, he travels to Durham for a $12,000 shot and a pulmonary function test. At his last test, his lungs were functioning at 50 percent and his small airways at 17 percent.

“For him, breathing is like one of us breathing through a straw for 90 seconds,” said Tesla. “It’s a never-ending battle. Even when you go to sleep, you worry if he’s OK and wonder what you’ll find in the morning.”

Despite the challenges, Tesla said Nathan is determined to be a normal high school student. He loves the Cleveland Cavaliers, especially Lebron James, is 6 feet tall and still growing, occassionally fights with his three siblings, and is told by his caregivers that he can do whatever he puts his mind to.

“We tell him he has cystic fibrosis, but he is not cystic fibrosis,” Tesla explained.

One thing the family has that most teenage families don’t have is medical bills in the tens of thousands each month. Altogether, Nathan’s medical expenses top $47,000 monthly, or $564,000 yearly. While the teen is currently on disability, Tesla says she’s worried about its future.

“Of course, the government puts a cap on disability anyway, but if it were to get cut like they’re talking about in the state legislature, we will lose our insurance,” she explained.

For that reason, but, more importantly, for the sake of Nathan and those like him, the family is conducting fundraisers. From now until April 2018, Team Nathan will have an account set up at First South Bank in Elizabethtown.

This month, raffle tickets are being sold for items donated by local businesses. A $5 ticket, or five for $20, buys a chance at items like Yeti tumblers, rain boots and a raincoat from Toddlers and Teens, or a monogrammed bag from All Out Stitches. Tickets are available by contacting the family through Team Nathan’s Facebook page, or by visiting the Bladen Journal, Fowler Jewelry, Grace and Co. in Bladenboro, or Pine Ridge Hair Care.

Team Nathan T-shirts will also be available for sale soon and can be ordered by contacting Tesla at 910-633-5718.

All money raised will benefit Great Strides of Durham, which seeks a cure for cystic fibrosis.

“They’re making a lot of advancements toward a cure, and we’re just living on a prayer that we will find a cure before it’s too late,” Tesla remarked.

Chrysta Carroll can be reached by calling 910-862-4163.




By Chrysta Carroll