The theme for Rare Disease Day a few days ago (feb 29) was: Join us in making the voice of rare diseases heard.
In honor of that I wanted to post a few images from a project I started years ago. The story is of my friend Nick, and inspiring man with Morquio Syndrome who I first met while taking pictures for a pharmaceutical company. Every year I return to the small town in rural Louisiana to spend the day with his family. This year I’ve pulled the first few years of images together on my site.
The full story will be a decade in the making. <the gallery>
We had a moving, inspiring and wonderful picnic Saturday at the ranch for all the people we photographed for Facing Chemo. Amongst the food, and games and a great home-made chicken piñata, I managed to re-photograph everyone.
Here’s the first diptych of the first person I photographed for this project.
I got an email from an art student last week that started with, ‘Your work inspires me.’ Always nice to hear, but it got me thinking – what inspires me?
It’s not the places I get to see or the objects in my life, it’s the people. The real people I get to meet and photograph every day. Listening to their stories, and getting to re-tell these stories visually. And, every once in a while I meet someone who really moves me, shifts my focus. This guy was one of those people.
We were sent to southern Louisiana to meet and photograph a young father of two. Nick has a genetic disorder called Morquio Syndrome. We were photographing him for BioMarin, a pharmaceutical company that’s developed a treatment for Morquio and other rare genetic diseases. Like many of the diseases in BioMarin’s focus, Morquio is extremely rare, which is what brought us to this very small town.
With a rolling Cajun twang, Nick told me how he’d grown up in rural Louisiana, fending for himself without ever taking a dime of public assistance. His wife, with whom he has two wonderful kids, grew up in the same town in which they now live. With his daughter at his side, he told me how she’d been playing volleyball in middle school but hadn’t had a great coaching experience. So, without ever having played volleyball, and himself being in a wheelchair, he and his wife began to coach the team. There he was, in their backyard, serving volleyballs for her to bump and set back to him. Never doubting or complaining, he simply saw a problem and dealt with it the best way he knew how – by doing it himself.
Nick works full time at an automotive business, and, when I photographed him with his own car, he showed me the pedal extensions he uses in order to reach the brake and the gas pedals. They weren’t some stock pedal extensions, ordered from a medical catalog, nor did he ask an insurance carrier to buy modifiers so that he could drive his car. Instead, he went to the back of the machine shop, measured what he needed, and got it done.
Climbing up onto the dog house, wielding a hammer, he showed me the dog pens that he cleans out by himself, and I met his favorite dog – the one he walks down the modest street where his lives. While Nick is able to walk, he uses a chair to get around most of the time. Morquio causes a great deal of pain in the joints while standing, even for short periods of time. So, Nick’s dog walks, involve him holding the leash, while he pushes himself down the street in his chair, backwards, so that Nick can push with his feet. His dog follows with the same simple tenderness toward him that I saw come from his kids.
Clearly meeting someone like this makes me think, makes me want to hug my kids, makes me want to say thank you for the life I have, all the things I can do. But even more than all of that, this encounter makes me want to tell Nick’s story, beyond just a snapshot in time of an inspiring person. I’ve decided to travel back to Louisiana every year to continue photographing Nick, in essence, turning a one-time assignment into a long-term study. His story is not only one that I want to keep telling, but one that I want to continue experiencing.
Early this week I was working on an annual report for BioRad Laboratories. While shooting the CEO, we noticed a hummingbird had hit a plate glass window on the side of the building and was lying on the ground stunned. I stopped shooting and picked up the bird and tried to put him down by a tree nearby, but his grip on my finger was so tight, I couldn’t release him. So, I decided to let him ride along and kept shooting. I even put him on my PocketWizard transmitter where he stayed for a while as if he was art directing. Although he did have a bird’s eye view of what we were shooting.
- watch the bird
studio news \katie… the printed version arrived at the studio last week – nicely done Bio-Rad 2012 Annual Report. Bob’s been photographing images for this bay area biotech company for 8 years. Great to see their growth and success up close.