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Gary and Amanda Darst of Cecilia don’t take breathing for granted.
The couple’s son, Preston, 19 months, was born with cystic fibrosis, a chronic disease that affects the lungs and digestive system with potentially serious repercussions.
“If he gets a cold, it could be life-threatening,” Amanda said.
Preston enjoys playing with toys scattered on the living room floor only a few feet away from a bronchial dilator, a machine from which he gets breathing treatments throughout the day to open his bronchial passages. When his mother prepares the treatment, Preston puts the mask to his nose and mouth as casually as drinking a sippy cup of milk.
Morning breathing treatments are followed by 20 minutes of firm tapping on Preston’s chest and back with a makeshift percussion cup to break up mucus that builds up in his lungs.
Every three hours, Preston must be fed PediaSure through a port on his abdomen known as a Mic-Key button. Every time he eats, he must take two capsules of medicine to make sure his body is absorbing the nutrients he needs.
“He’s already at the point where he tries to hook up his own Mic-Key button,” Gary said.
Medicine and medical supplies for Preston fill a kitchen cabinet.
Most who see Preston don’t realize he has cystic fibrosis, the couple said. He might look fine on the outside, but on the inside, he’s very sick, Amanda said.
“Looks are deceiving,” Gary said.
Gary, who is a pharmacist, said he knew a little about cystic fibrosis at the time Preston was born. On the other hand, Amanda, who was a pharmacy technician at the time, had not heard of the disease.
The Cystic Fibrosis Foundation says the disease affects about 30,000 children and adults in the United States. It is caused by a defective gene and its protein product which cause the body to produce unusually thick, sticky mucus.
That mucus clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas, keeping natural enzymes from helping the body break down and absorb food, the CFF says.
“Apparently, it takes one gene from one parent and one gene from another parent,” Gary said.
About 1,000 new cases of cystic fibrosis are diagnosed each year, and more than 70 percent of patients are diagnosed by age 2, the organization says.
“Luckily, we found it as a newborn infant,” Gary said.
Preston had a blood screening just after being born.
“They already suspected something just because of symptoms he was having,” Gary said.
Preston began spitting up what they tried feeding him shortly after his first feeding, which lasted only about five minutes, Gary said. They found a blockage in his intestines that required surgery to remove.
“He had a colostomy bag for maybe three months,” Amanda said.
The blood screening confirmed cystic fibrosis.
By the time he was 1 year old, she said, Preston had undergone three surgeries.
In order to keep Preston safe, the Darsts have to be vigilant.
“We have to keep him away from anyone sick,” Amanda said.
With two girls, Olivia, 8, and Emma, 5, in the home, the family schedule is filled with activities. Girl Scouts, cheerleading and soccer require them to be out in public, but the couple doesn’t think twice about politely appearing to be anti-social.
“We don’t really sit with other people,” Gary said, noting they do anything they can to keep Preston from becoming sick.
For example, they avoid smokers. Signs of illness in others especially are distressing.
“You become more aware of all those sounds,” Amanda said. “I hear a sneeze and I panic.”
The CFF says the predicted median age of survival for someone with cystic fibrosis is more than 37 years.
Preston has the most common gene mutation that causes the disease, Gary said.
“Which is, in our eyes, a good thing,” he said, explaining more research and information is available about it.
They both hope for a cure and they are encouraged by a number of new drugs in the works. Amanda’s mother, Cindy Bratcher, executive director at Atria Senior Living, organized a Thursday night fundraiser to benefit the CFF.
Gary, who lost a 7-year-old son from a previous marriage to cancer, said he and his wife have decided not to have more children. The couple has a one-in-four chance of producing a child with cystic fibrosis, he said.
Although the couple has had little time to themselves and find it tough at times to maintain a household schedule, the realities have become part of their lives.
What might create hardship for some has created closer bonds between the couple and their children. The girls, Amanda said, love baby Preston and pray for him all the time.
Their situation has had an impact on the couple’s perception, too.
“It makes you appreciate the day,” Amanda said.
“People should really slow down and be thankful for what they have,” Gary said.
Robert Villanueva can be reached at 270-505-1743 or email@example.com.
TO HELP OUT
Atria Senior Living hosts a casino night fundraiser to benefit the Cystic Fibrosis Foundation from 5 to 7 p.m. Thursday at Atria, 133 Heartland Drive, Elizabethtown. A $25 donation grants access to a night of casino-style games. A silent auction and food also is part of the evening. For information, call 270-360-8001.