Nicole McGreger, of Bruce, always strives for normalcy when it comes to her three girls, but that can be a challenge at times when two of the three have Cystic Fibrosis – a life-threatening disorder that causes severe damage to the lungs and digestive system.
“I deal with it one day at a time. I’m a very quiet person,” Nicole said. “I don’t mind talking about it, I’m just not a sharer. You do what you have to do. They’re my kids, so you do whatever is needed and keep going.”
Nicole’s oldest daughter Laken Burt, 16, was diagnosed when she was 8-months old.
Chloe Beth, Caitlyn and Laken Burt recently returned from a trip to Walt Disney World with their family that was sponsored by the Make-A-Wish Foundation. Chloe Beth, 8, and her oldest sister Laken, 16, both have cystic fibrosis. Caitlyn, 13, does not.
“Laken hasn’t had a lot of trouble until the last couple years,” Nicole said. “We’ve had some hospital stays for bronchitis and pneumonia and now she’s on oxygen all the time.”
Cystic fibrosis is an inherited condition that affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.
Nicole’s middle daughter, Caitlyn Burt, 13, did not pick up the CF gene, but her youngest Chloe Beth, 8, did.
Like her older sister Laken, Chloe Beth undergoes daily breathing treatments and takes medication with every meal. Her cystic fibrosis was detected with newborn screening.
“It was naturally disappointing when we received the word because you’ve been through all that with Laken – the breathing treatments and everything else – but you do what you have to do,” Nicole said.
Children must inherit one copy of the CF gene from each parent in order to have the disease. Nicole said she was aware of some history in her family, but her ex-husband Jody Burt, the girls’ father, had no known history.
“I had a cousin (Cara Thomas) that died of Cystic Fibrosis when she was five years old 30 years ago, so it didn’t surprise me that it ran in my family,” Nicole said. “We weren’t aware of any history in Jody’s family to suggest he was a carrier, too.”
“There’s a 75% chance your kids won’t have it,” Nicole said. “So we wanted more children and then when Caitlin didn’t have it, we thought we would have another child. I always said the good Lord gives you what’s yours. You take it as it is.”
Although Cystic Fibrosis requires daily care, most people with the condition are able to attend school and work, and have a better quality of life than in previous decades. Recent improvements in screening and treatments mean most people with Cystic Fibrosis now live into their 20s and 30s, and some are living into their 40s and 50s.
Chloe Beth goes every three months to the doctor. It was during one of those visits she was informed she was eligible for a Make-A-Wish trip. She chose to go to Disney World, just as her sister Laken did when she was younger.
“We visited all four Disney parks and Sea World,” Nicole said. “It was a great time for all of us.”
Nicole, Laken, Chloe, Caitlyn and Nicole’s husband Sammy McGreger and his children Chloe, 12, and Hunter, 13, all made the trip.
“I loved Hollywood Studios the best,” Chloe said. “They had the best roller coasters.”
“Chloe Beth is still young so she takes the breathing treatments and medication, and otherwise is a normal child,” Nicole said. “Laken is having more symptoms right now, and we’re pursuing a lung transplant.”
“She passed the initial tests at UAB, and we go back in November for a second round of tests. If we pass all that, she will get on the list, and we could get a call at most anytime that they’re ready for us.”
Laken became diabetic when she was 12, which isn’t uncommon for girls with CF, and she wears a pump.
“She had a lot of trouble gaining weight, so she does feedings at night. She has a small GI tube in her belly, and we hook up a Boost at night and it gradually feeds her as she sleeps.”
The care can seem like a lot to others, but it’s just another day to Nicole and her girls.
Nicole McGreger
“It’s just normal to us. It’s all we’ve ever known,” she said. “We talk about it when Laken goes to the hospital because that’s a two week routine, and we’ve discussed it a lot recently deciding about pursuing the lung transplant, but it’s not something we focus on.”
“I don’t like a lot of attention,” Laken said. “I don’t like being thought of as different. I’d rather not be singled out for anything.”
While normalcy is striven for, Nicole makes certain preventative measures aren’t overlooked.
“I talk to Chloe about the importance of doing everything required for long term results, but it’s mostly routine to us. We get up every morning and do a breathing treatment, go to school, come in and do a breathing treatment before you go to bed.”
“We don’t let CF dictate or consume our lives,” Nicole said. “I’ve wanted as normal a life as possible for my girls, which is a reason I don’t talk about it a lot. I don’t want people to see CF when they see my girls.”
Caitlyn, the middle daughter who is CF-free, plays softball at Bruce and is on the go all the time, Nicole said, but is always around to support her sisters.
“They don’t like to be treated differently, so I don’t think of them any differently,” Caitlyn said. “They’re just my sisters to me.”
“They are all close,” Nicole said, “minus the normal sibling stuff.”
As they await word from UAB on a new lung for Laken and continue the daily routine that battling CF requires, Nicole and her girls deal with it all one day at a time.
“You do whatever is needed for your kids and you keep going. It can be tiring, but it’s very tiring for them also, so I always keep that in mind,” she said. “My number one job is to be mom for my girls. That’s all I worry about.”