Natalie was six months pregnant when a sonogram showed what appeared to be a blockage in her baby’s intestine. There weren’t any tests to check for CF available in 1986 and the disease didn’t run in Natalie’s family, but she and her healthcare providers were concerned. They planned to have Natalie deliver at a hospital with an advanced neonatal intensive care unit (NICU). Then three weeks later, a routine baby-check appointment turned into hospitalization for Natalie when they diagnosed her with preeclampsia. Things quickly escalated and three days later, she had a seizure and her son was delivered via emergency cesarean. Natalie didn’t learn until later that her newborn son had been rushed to surgery when he was 11 hours old to repair the blockage and that he did, in fact, have cystic fibrosis.
“It was shocking, scary and upsetting.” Natalie remembers, “But to know him is to love him. He’s a fighter.”
Natalie’s son left the hospital three months later, but Natalie was instructed to continue his daily routine of morning and evening airway clearance therapy at home. Each session took about 30 minutes and consisted of clapping her hand on his chest in a specialized way to loosen mucus. When he was four, he began needing regular nebulizer and aerosol treatments to manage the excess mucus in his lungs.
Learning to Manage Cystic Fibrosis as a Family
Despite these challenges, Natalie says her son had a normal and productive childhood. He had a great sense of humor and would tell people the worst thing about his life was being allergic to chocolate, which was a real drag at birthday parties. In fact, the only thing CF prevented him from participating in was a class trip because parents weren’t allowed to attend, and he needed his parent’s help with chest therapy morning and night.
When he turned 18, Natalie remembers thinking, “wow, he made it.” It was such a different outcome than the high school friend she remembered. Unlike the previously predicted life expectancy for cystic fibrosis, that described the disease as a condition of children and teens only, Natalie’s son had made it to adulthood and was thriving. The birthday celebration was great, but afterwards they began to face new challenges.
Though Natalie’s son was still on his parents’ insurance, he was now an adult. Healthcare providers suddenly stopped acknowledging Natalie in appointments. “When they were taking his medical history, if he left something important out, I’d speak up,” Natalie remembers, “And they would look at me like, why are you talking?” As a parent, it can be difficult to give up control as your child grows up. But if you have spent the last 18 years advocating for your child’s care because he has a chronic lung disease, it can be even more challenging.
Natalie’s son is in his 40s now, married and living successfully and independently with a job he enjoys and hobbies that keep him busy. But a mother’s job is never done, and she still worries about him. As an adult being treated for CF, she has noticed he isn’t always adherent. He’s been on a new treatment for several years, and Natalie worries that since his lung function is so good, he is no longer always taking his other medications as prescribed. Though it can be a battle for a loving, protective mom and independent, living-his-own-life son to find middle ground, they work hard to find ways of managing his condition together. As a nod to this, Natalie noted that her son puts on his medical forms to talk to his mother first, and then his wife.
Thinking back on the past 40 years, Natalie states, “I’m very thankful because we weren’t sure he would live.” She doesn’t take a single day for granted and recognizes the somber reality that there are people they’ve known with CF have passed on. She takes joy in her son, who, “always gets 36 hours out of every 24-hour day.”
How Research Has Improved the Lives of CF Patients
In addition to a mother’s persistence and son’s determination, a huge reason for Natalie’s sons’ current quality of life is the groundbreaking advances in medical research. Her son was born in 1986, and three years later researchers discovered the CF gene. Since then, modulating drugs that target the underlying cause of the disease – the malfunctioning protein – have become available. These medications don’t just treat symptoms but repair and correct the issue. These drugs have been a gamechanger, as have new and improved antibiotics for the inevitable infections that occur. Unfortunately, as Natalie pointed out, recent cuts to the National Institutes of Health funding are detrimental not just to cystic fibrosis research, but all rare disease research.
This May, as we celebrate both Mother’s Day and Cystic Fibrosis Awareness Month, we asked Natalie what she wishes people knew about CF and she responded with a message of hope:
“I wish people who have children diagnosed with CF today knew that this is not the death sentence it once was. There are so many improved treatments. If you were diagnosed today, the median life expectancy is in the mid-60s. Be informed and involved, and advocate for your child. They have a bright future ahead.” - Natalie
Blog last updated: May 27, 2026
