Erika Judd shares her son’s experience battling cystic fibrosis and participating in a clinical trial

At eight months old, Erika Judd’s son, Dayson, was diagnosed with cystic fibrosis (CF), a progressive genetic disease that causes persistent lung infections and limits the ability to breathe over time. After years of battling the disease and more than 15 hospital visits lasting up to two weeks at a time, at age 12 Dayson enrolled in a clinical trial that ultimately “changed his life.” Dayson has been out the hospital for a year now and is doing better than ever. 

When my son was 8 months old, he was diagnosed with CF. For Dayson, life with CF has been very challenging. His entire life he has been taking pancreatic enzymes every time he eats and has to do two to four breathing treatments every day along with chest physiotherapy. He has three healthy sisters and if his sisters get sick, they get over it in a couple of days. When Dayson gets sick, his body has a hard time getting over it and he will be sick longer and have a harder time. Many times, he has ended up in the hospital to get IV antibiotics due to sickness that healthy kids would get over quickly. We have lost count of the number of antibiotics he’s been on his entire life. He has had 15 hospital stays and they average two weeks per stay. That of course gets in the way of school work. Dayson also has always had a hard time gaining weight. He doesn’t have a feeding tube and has never needed one, but there are a lot of CF patients who do. We try to make his life as normal as possible and try to make the treatments and medications routine, like brushing your teeth, but there are times that it definitely gets in the way of normal life. Parenting is difficult enough, but then to add to this a diagnosis where you don’t know if you’re going to outlive your child or not, it’s really difficult to parent. When Dayson was diagnosed the average lifespan of a CF patient was 32, but it’s in the mid-40’s now. 

After 12 years of facing these challenges, the clinical trial Dayson participated in couldn’t have come at a better time. Dayson has been out the hospital for a year now and he’s doing better than he’s ever done.

The lessons I have learned are: 

1. The clinical trial experience can be very positive for patients and caregivers
Our clinic did a good job of educating us on the clinical trial. There weren’t any huge surprises for us because Dayson had been hospitalized 15 times and was used to two-week hospital stays. Participating in the study was like a walk in the park compared to what he had been through. They explained what was going to be happening at every visit, and because they had shared all the information from the beginning we knew what we were signing up for, we knew what to expect and didn’t find any challenges participating in the study.

Dayson reacted very well to the trial. Some of the visits were long, but we were just so grateful to be in the trial and so what they were asking from us seemed easy for what we were getting. 

2. Patients groups are a great support system
Our CF community in Tucson is a pretty tight community and we have a support group once a month. CF patients have to be at least six feet apart from each other if they are indoors, so that is another thing that makes it hard. We can’t really get our kids or families together because the CF patients can’t be together. But having the support of others who are going through the same thing as you are is incredibly helpful. 

3. It’s important to overlook the stigma around clinical trials and remember they show great promise
There is a stigma around clinical trials and I think maybe people can be afraid to participate in a clinical trial. I’ve never had that experience; I’ve never been afraid of clinical trials, but I’m sure everyone’s experience is different and people have been told different things. But in my experience, I felt completely safe putting my son in this trial. As one of Dayson’s doctors told us, it’s important to remember that trials have great promise. 

Learn more about Dayson's journey by watching this video.