NIH Clinical Research Trials and You
Volunteer Story: Holden (Crohn’s disease)
On the surface, Holden looks like the typical ten-year-old boy — soccer jersey, blonde hair and blue eyes, even freckles. But spend some time with him and you will realize that he is dealing with a chronic illness, Crohn’s disease, that makes his life anything but ordinary. Lauren Frohne, a UNC graduate student, undertook a photojournalism project chronicling Holden at home, at school and at UNC hospitals, where he is participating in a clinical trial. His mother says Holden feels much better since joining the trial and has gained the confidence to go to school and get back on the soccer field. “I was very skeptical about doing a clinical trial,” she says. “My other option was to watch my son get more and more sick. I decided this was a risk I was willing to take, and it is a risk I would take over and over again, to have my child healthy and happy.”
Living with a chronic illness would be a burden for any patient, but can be particularly difficult for children.
A clinical trial led by UNC researchers affiliated with NC TraCS is helping one young patient with Crohn’s disease do what kids do best: be a kid. Since enrolling in a clinical trial, Holden Frohne is back to playing soccer — his passion — and laughing with his friends.
I think he internalizes it all; he really does not talk about it; he truly wants to pretend like it doesn’t exist right now. Crohn’s disease is an inflammatory disease that attacks the entire digestive tract. It’s not like some of the other diseases out there. It’s one that is embarrassing. It’s very difficult for children to explain to their friends why they have to go to the bathroom 10 times a day, so he has become much more private, very scared to let others in his life.
Holden is in the Humera clinical trial with Sandra Kim, and he gets an injection every two weeks.
Ineligible background conversation
I was very skeptical about doing a clinical trial, because I had the idea he was going to be a guinea pig, it was very hard for me as a parent, I felt like I was kind of playing Russian roulette with his life down the road. If I didn’t get him medical treatment he would just become worse and then he would have no quality of life.
He feels so much better since he started this clinical trial, and I think it’s given him the confidence to go to school, it’s given him the confidence to be able to participate in the sports. My son is a very avid soccer player, it’s his passion in life, and when he’s saying he can’t go to soccer, I know something’s really wrong.
Not only has he gotten better, but we’re getting a different level of care that we’ve received in the past. We see the same nurse every time we go; we have the same woman that draws his blood each time we go, so it becomes almost like a family. They go beyond treating Crohn’s disease; they look at my child as a full child. They look at my child as a whole child, and they treat the whole child.
Nurse (joking): “How much do you torture your mother? This has nothing to do with your Crohn’s disease.”
Holden: “Maybe three times a day …?”
I do worry that the drugs could have an effect on him 20 years down the road. My other option was to watch my son get more and more sick. I decided this was a risk I was willing to take, and it’s one I would take over and over again to have my child healthy and happy.