Ashley was 20 weeks pregnant with her third child when a routine ultrasound showed something concerning. A bright spot on the baby’s lung suggested he might have a complication called congenital pulmonary airway malformation (CPAM). “My doctor told me there was a chance he may need to have surgery, or he may not survive if the CPAM continued to grow because it was pushing on his heart,” Ashley recalled.
They were immediately taken to a maternal fetal specialist, who gave Ashley and her husband information about the condition. They explained that there are two common ways to approach CPAM. Some doctors prefer to leave it in and see if it causes problems while others prefer to remove it to prevent any possible issues. The specialist suggested weekly check-ups to keep an eye on the spot so they could monitor it and step in if the CPAM grew.
Luckily, Ashley was able to carry to full term, and Luke was born into the arms of waiting neonatal experts. He seemed healthy, but an elevated heart rate and the CPAM diagnosis meant he spent a week in the NICU for observation. At just two months, Luke received his first CT scan to better assess the CPAM lesion. The scan showed that it had grown to take up an entire lobe of his lung, so the pediatric surgeon strongly suggested removing it. "It was the size of an apple when they removed it from his tiny three-month-old body, and by the next day, the lung tissue had expanded to fill the space the CPAM had been,” Ashley explained.
In addition to the surgery, Luke’s first few years were riddled with sickness because he was more likely to catch an illness, and when he did so, his symptoms were often severe. “He was very wheezy and you could hear that his lungs were junky. You couldn’t be in a room without hearing him breathe loudly,” Ashley said. At just 7 months old, Luke was admitted to the hospital where he was sedated and intubated, and a bronchoscopy determined his airways were dangerously inflamed. The doctors determined Luke had tracheomalacia, which is a weakness of the tracheal cartilage that causes the windpipe to collapse upon exhalation. “It was a really scary experience because they had to keep giving him more and more medication,” said Ashley. It would be a week before they were able to leave the hospital with strict instructions to follow up with their pulmonologist on next steps.
Luke spent the next four years struggling to breathe. He continued to be at high risk of severe respiratory complications when he got a cold or the flu. With the help of his pulmonologist, he was approved for an airway clearance device which helped loosen the mucus in his lungs so he could cough it out. He continued to use this vibrating vest twice a day until age 7.
Learning How to Manage Lung Disease
Before Luke was diagnosed, Ashley knew very little about lung disease because it didn’t run in her family and her other children were healthy. So, Luke’s pediatric pulmonologist became a crucial resource. He was knowledgeable and compassionate, and he helped Ashley take an active role in Luke’s health. “I was a stay-at-home mom at the time and knew Luke’s condition really well. The pulmonologist was so great about working with me and asking me things like, ‘What are you seeing?’ ‘What do you think it? Is it helping or not working?’” she said.
Now 10 years old, Luke has been able to enjoy sports and other activities thanks to the work his parents and his doctors have done to help manage his condition. He was diagnosed with asthma a few years ago, but with the help of a preventative inhaler, he has been able to play soccer and run cross-country without any issues. “Because his lungs have been in the forefront of our minds since before he was born, his asthma diagnosis felt manageable. And now, because it is not an extreme case, it doesn’t affect our lives as much,” Ashley stated.
Finding Community at Fight For Air Climbs
Despite Luke’s improvement, the impact that his condition had on the family was immense. So, when Ashley was approached about donating to or sponsoring a team at the Fight For Air Climb, she didn’t hesitate. “I explained how my son had a lung condition and that I would absolutely love to contribute,” she said.
Unfortunately, COVID-19 shut down the Climb in 2020, but Ashley stayed connected to the Lung Association and when things opened back up, she and Luke decided to volunteer. The next year, Luke, his brothers and father decided they wanted to participate as climbers. And by the third year, the entire family was committed to climbing and volunteering, and they have been doing so ever since. “It is such an uplifting event, you can’t go without leaving inspired and impressed with everyone involved. It’s just such a great group of people to be around,” Ashley exclaimed. “I love watching the firefighters climb, and then climbing with my family as we help each other make it up the stairs.”
Luke is currently a happy and healthy child, who every year inspires his family to tackle 1,191 steps in remembrance of what he and other patients with lung disease go through. “Everyone knows someone affected by a lung condition, so I love that we are honoring them. It just feels like such a good way to pay tribute to those people, by doing something that works our lungs.” Ashley said.
Blog last updated: March 31, 2026
