Cystic fibrosis (CF) is a chronic health condition that causes thick mucus to build up in the body, which causes problems with breathing and digestion, according to marchofdimes.org. Both parents must have the CF gene to pass along the genetic disorder to their child. Although it is considered a rare disease, 30,000 people in the United States have CF, and about 1 in 4,000 babies are born with it, according to the March of Dimes organization.
There is currently no cure for the disease.
Most people don’t know or understand CF unless it affects them or someone they care for. More common life-threatening diseases receive most of America’s attention and donations, but CF doesn’t receive a significant amount of government funding for research or drug development compared to more common diseases. That’s why parents of a child with cystic fibrosis often must inform the public on CF and help raise money for research, all while dealing with the multiple challenges that come with raising a child with CF.
Thibodaux native Missy Lawton dedicates her time and effort to making the lives of cystic fibrosis patients easier, safer and more fulfilled through her advocacy.
Although she and her husband Sid are well-versed on CF now, they weren’t when they first learned they both carried the gene.
“It was just a shock to us,” Missy remembers. “We thought it would have come up in our family prior. We’re both medically inclined, educated. It just completely took us off guard.”
On March 2, 2016, James Lawton IIII was born with cystic fibrosis, and his parents were determined to provide the best possible life for him. “We were bound and determined that our son was going to get the best medical care he could ever have,” Missy shares. “We’re going to have a positive outlook. He was going to have a great life...And that’s what was going to happen.”
A retired nurse, Missy provides most of James’s medical care. Daily activity at home includes sterilizing equipment, breathing treatments and medicine intake. “You're getting medicine together before you can even get ready to have a normal day,” she says. “And then at night, it's the same thing.”
That’s just on days when James is healthy, Missy says, if he is feeling sick, an array of problems can occur.
But James’s health is currently trending in a positive direction, which Missy attributes to the Cystic Fibrosis Foundation, the organization she advocates for.
“What cystic fibrosis is, basically, a combination of two gene mutations that cause a sodium chloride defect in the body. It basically dehydrates cells of their mucus secretions throughout the whole body,” Missy explains. “If you really think about it, secretions are just so important in multiple organs for transport and mobility. The thing about cystic fibrosis, there are all kinds of different mutations.”
When James was born, there were no medicines to treat CF at the cellular level for his certain class of mutation. But Missy and Sid came across the non-profit CF Foundation, which receives no government funding. They discovered that not only does 89 percent of every dollar the foundation earns goes directly to research and drugs for CF, but also the organization would soon release medicine that treated their son’s specific mutation at the cellular level.
Thanks to Orkambi, the medicine developed through funds raised by the foundation that James started taking in September 2018, he is in better health. “He gained several pounds just from a month of being on Orkambi. He has gotten through several respiratory infections beautifully, no hospital admissions,” Missy says. “We actually did a baseline CT on him this past spring, whereas 40 percent of CF kids normally have some nonreversible damage in their lungs by the age of three – he had none.”
Missy is highly involved with the CF Foundation, spreading awareness, helping raise money and giving her talents in any other way she can. “If you don't spread awareness, then other people won't know, and they won't care. And I feel like if they don't, we will lose everything that the foundation has worked so hard to do,” she says. “We’re close to finding a cure.”
Donations to the Cystic Fibrosis Foundation can be made at cff.org.
“With the multiple doctor visits, specialized medical teams, daily treatments and medications, James inspired us into believing,” Missy adds. “Yes, it’s burdensome, as we are always seeking for a ‘normal’ life for our children. Yet, we do not complain because without all of these treatments and beautiful medications and breakthroughs, our children would not have a chance at life at all.”