Spent last week photographing for an annual report in Chicago and DC for a pharmaceutical client. Shot doctors, patients and some folks from the National Organization of Rare Diseases. By far the best time was spent with the sweetest 4 year old girl outside DC. She has Morquio Syndrome – also known as MPS IV, a disease cased by an enzyme deficiency. It results skeletal dysplasia and joint abnormalities.
I’ve photographed quite a few NPS VI patients in the past few years and each one of them have been so positive and inspiring – always smiling and this little girl was no different. Unlike MPS VI, there is no current treatment for Morquio Syndrome, though there is one proposed by the pharma for which I was photographing. The treatment for MPS VI involves enzyme replacement therapy – given as weekly infusions.
The 4 year old girl in DC has a laugh so infectious I spent two hours sitting on the floor with her grinning ear to ear behind my lens. She didn’t care that I was shooting so much – we left with 1000 images on the laptop. She was just happy that I was there – spending time, playing. At one point she donned a Cinderella dress, closed her eyes, and twirled around in the middle of her room. No cares about her bones; at that moment, she was a princess. I look forward to posting images from this.
Many people ask me if it’s sad or depressing to photograph these kids, and they are always surprised when I respond that it is just the opposite. The positive attitude of the kids always supersedes any other thought or concern. With their attitude, their laugh, I find myself more caught in the moment than I am at times at home with my own family. Leaving this girl’s house I actually felt sad wondering when the last time was that I sat on my son’s floor for two hours watching him play.