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.

Advertising photograph of Healthcare  for BioMarin Pharmaceuticals

 

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.

BioMarin - Morquio patient

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.

Pharmaceutical advertising photograph of a patient with Morquio

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.

BioMarin - Morquio patient

3 replies
  1. Mandy Frederick Vernon
    Mandy Frederick Vernon says:

    It seems Nick has captured part of your heart by your willingness to return yearly to photograph him. I smiled the entire time I was reading this article, because the subject happens to be one of my favorite people on this planet.
    I was first introduced to Nick twenty two years ago. He has been part of our family ever since. He is a great person whose life does not revolve around his disability. He has worked so hard in whatever he chooses to do in, rather than sitting back and let everyone do it for him. In my eyes there is nothing he can’t accomplish in spite of his disablility. He has such a great personality and sence of humor.
    Thank you for highlighting such a REAL person.

    Reply
  2. Angel boutte
    Angel boutte says:

    I first meet nick playing baseball with my son. Nick was older but played with the younger ones. He played for years with the same group of boys. He never gave up. He played like the others did. No one made a difference with him. They boys protected nick. And I know my son learned a lot abound a person who has problems and I know my son looked up to nick. A great guy husband and father

    Reply
  3. Dawn Rodriguez
    Dawn Rodriguez says:

    While I haven’t met Nick or his wife, Angie face-to-face yet, they have been a great online support to me for close to 3 years now. I also have Morquio/MPS IV-A. I’d participated in the longitudinal studies of Biomarin since 2011, but didn’t know how/where to go about getting information on who/how to get in the clinical trial or Extended Access Program for those of us who are over-18 yrs. old and wanted to test in the enzyme replacement therapy. I was diagnosed in 1975 at 4 yrs. and the doctors told my grandparents (legal guardians since my birth) that I wouldn’t reach my 10th birthday. I am now 42 yrs. old and have outlived at least 3 of those specialists who gave that rather sad prediction.
    Nick was instrumental in encouraging/pushing me to make the phone call to Biomarin and set up a meeting with them in 2013. I made contact with Biomarin. My parents never gave up HOPE that a treatment would be found eventually. It was just a matter of if it would be found in my lifetime. This February 14, 2014 – the FDA finally approved the First & Only treatment for Morquio, Vimizim is an enzyme replacement therapy infusion (4 hrs. weekly I.V. infusion for life of person). I’ve waited 39 years since diagnosis to see a treatment (And they say “Women are impatient”).
    thanks to Nick’s encouragement & persistence to make that call, I am now in process and awaiting the acceptance of my local hospital to offer ERT Infusion to me. I’m the only Morquio patient in town (San Antonio) getting treatment. I am friends with three other Morquio adults (females) waiting for infusion – 3 Texans (Arlington/Dallas, Austin, NY and San Antonio). Together we are “The Fab Four” and have made t-shirts announcing that we are “The Fab Four reaching for the Stars” and will wear the t-shirts in solidarity & support of each other. … Nick started the ball rolling and I was able to encourage & pass the ball on to the rest. Paying it Forward.

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *