A Q&A with Photographer Christie Zink of This Little Light, Part II

Last week, we began our conversation with photographer Christie Zink of Elan Images and discussed her growing work as an EB advocate, in particular through This Little Light, her nonprofit organization launched late last year. This week, we get to the heart of her dedication to raising awareness and research funding as we learn about her recently successful I Refuse campaign and participation as a co-captain for PUCK’s recent team effort at the Children’s Cancer Research Fund benefit walk Time to Fly. Please note: the Time to Fly event has since taken place but had not at the time of this interview. Christie was able to raise over $12,000!


EB Resource (EBR): One of the ways you’ve gotten more involved with supporting EB families and research efforts beyond your photography with This Little Light is through other awareness campaigns you’ve launched like, most recently, the I Refuse campaign. Can you share a little bit about how that came to be and the goals behind it?

Christie Zink (Christie): It’s become way bigger than I anticipated. It was before Christmas, and I had just gotten back from Louisiana again. One of the things that started happening as I got more involved was I would get messages from people who would say, "It’s so amazing what you’re doing, thank you," and I was so humbled by that. I was never and I still don’t ever think I’m doing anything extraordinary. I’m doing what needs to be done and following my heart, and doing what my heart tells me to do. But other people would send me messages that were not so nice …


EBR: Really?

Christie: Yes, I would get messages saying that I was exploiting the kids or using their situation for my own self gain. It always was so hurtful. And don’t get me wrong: the amount of positive messages I got completely outweighed the negative, but of course the negative ones are the ones that tend to stick with you sometimes. It was late one night, and I had gotten another negative message, and was really frustrated by the number of negative messages, I just made a Facebook post that said basically some people ask me why I do this and most people understand that it’s a positive thing but there are some people who are misguided, and I posted a video of a little baby and said, "This is why." And after that, someone posted a song on my page and said, "I want you to listen to this song, it reminds me of you." And I listened to it and started balling because it hit me so hard. And for the next two or three hours, I made a video with my pictures of these kids and, in days, created a Facebook event and started to do this. I thought I’m going to do something. We sold almost 400 of the first set of awareness kits, and now for this next one, I’ve got 200 more orders. And we’ll probably do another one. It’s pretty amazing, the support I’ve received and the people who are so willing to be a part of it. I was thinking maybe I would sell 50 shirts and now it’s kind of become a movement. We’re working on some different things to try to continue the momentum to make it bigger, and I have several people who are going to have events in their community using "I Refuse.” I feel like whenever you have the passion and desire, you can really achieve great things. I don’t have any intention of giving up.


EBR: What are you hoping to achieve?

Christie: There are three things that are so important to me: Supporting the families, because these families go through tremendous challenges, and there’s no way to sugarcoat it: this disorder ravages the babies inside and out and takes a toll on the people who have to care for them. It is an emotional journey. Trying to spread awareness is important to me, because the more aware people are, the more dollars go to research. And then obviously, I want more than anything for them to find a cure.


EBR: Late last year, a debate began in online communities like ours about whether or not sites like Facebook should be able to take down images of children with EB that it deemed too graphic because they do show the toll that EB physically takes on these children’s bodies, and it became quite a topic of debate for some time. What are your thoughts on the issue as a photographer and someone who often works with these families personally, assuming of course that their families have given permission to display the photos?

Christie: I have to honestly say that I feel that people need to see that. They don’t want to see what’s under the bandages. They would prefer to see the baby bandaged up. But in order to understand the brutality that these kids face every day, they have to know what’s under there. And if you don’t want to look at it, don’t. I know from personal experience that I have people who were friends with me on Facebook who aren’t anymore, and that’s fine. I understand. It is graphic. The same people will go out to watch a real graphic movie, but the difference is that’s fake. This is real, and they don’t want to see it. I really feel like people don’t want to know that this pain exists, but it does.


EBR: We saw that you are also taking part in the Time to Fly fundraiser with PUCK. Are you normally a participant in these kinds of race events?

Christie: No, the event itself for Team PUCK is a walk. I’m running as a personal challenge. My goal is $10,000, but I don’t know if I’ll get there. Right now, I’m at a steady $8,000.


EBR: Why was it important for you to join that effort?

Christie: I had decided that I was going to run in memory of Tripp Roth and Bella Ringgold and to honor Quinn Seymour, who has since passed away. For me, the work that Dr. (Jakub) Tolar and Dr. (John) Wagner do at the University of Minnesota is so critical and it’s so imperative that we do something. I knew that people in the EB community who followed Tripp also knew who I was, and I wanted them to know about this research in Minnesota. I want them to be able to find a cure and give these kids a chance at a better life. Tim Ringgold, the director for PUCK and such an inspiring man, contacted me about being one of the captains, and I had to recruit 10 people with a goal of $250 each.

I was getting a lot of people involved in Louisiana and not here. There are people in Minnesota who have EB and nobody here knows about them. Nobody realizes the important research being done. I wanted to get people in Minnesota involved. And this research is not all for EB. The bone marrow research helps many people with many different disorders. As I got involved with Time to Fly, I thought I could use another Facebook page of mine, EB Part of the Cure, which has over 2,000 fans, to be a catalyst to get people involved in Time to Fly. I was able to recruit over 20 people, and they didn’t know that this research and PUCK were here. This was a good opportunity to make people aware. My hope is that they would continue to do something beyond this event.


EBR: I noticed that you work with a lot of different EB organizations and not just one.

Christie: Yes, I do. I support EB families whether that be through DebRA, PUCK, EBMRF or JGSF. I would want nothing more than for everybody to work together because the reality is that we all want the same thing. These families need support. I’m not going to not do something because it’s for a particular organization. I want the families to be supported and I want these organizations to come together to do that.


EBR: How has learning about EB and meeting these families and, in particular, these young children with whom you’ve interacted and photographed changed anything for you in your own life or relationships?

Christie: These kids help me to be a better person. Tripp was my first experience with EB, and I’ve always said that he changed my life. Him, his life and what he went through helped me to be a better mom, to not take my kids for granted, to appreciate my kids, to not sweat the small stuff. My focus has totally changed. I see a lot of posts from people complaining about things that seem so petty, and I just thank God that I have had the opportunity to be touched in such a way that I know that I’m blessed. When I first saw Tripp in person, the trepidation I felt going into the house was pretty intense. I had no idea what my reaction would be, I thought I was going to fall apart, but I walked into that room and the second I turned my head and saw him, I felt such incredible peace … I watched Courtney and Tripp, and the ebb and flow of their love for one another, and it just transcended everything I knew completely. I thought about my kids, and I knew that I needed to make a change and wanted to make a difference. And the other thing I love is that my children are learning about compassion in a way that I couldn’t have imagined. It allows me as a parent to give my children experiences that will hopefully cultivate them to be loving, caring people.

1 comment

  1. Annie Leah McMorris says:

    Part II of an informative interview of
    Christie Zink about her calling to be
    an advocate of Epidermolysis Bullosa.