Saturday, January 5, 2013

I Saw The Light

It was late last night
I was feeling something wasn't right
There was not another soul in sight
Only you, only you
Then you gazed up at me and the answer was plain to see
'Cause I saw the light in your eyes

When I opened the door that morning I just knew this was going to be perfect. I had talked to Levi on the phone a few weeks before and was very impressed by his professionalism, but more importantly, his true interest and caring about our two girls and our family. I felt this project was an opportunity for him to do much more than just take a few photos. This project was an opportunity for him to use all his skills to capture a moment which would be timeless. It was an opportunity to sit, listen, share, and photograph two girls in such a way that the light that shines from them could be seen by everyone that walked in company's door. I knew this was going to be perfect because, just as I see the light in my kids, I Saw The Light in Levi.

A few months ago I received a call from one of the Patient Advocates at Amicus Therapeutics.  The company would be celebrating their 10th anniversary soon and wanted to know if we were open to Emma and Maddie being photographed for their new "Living In The Light" portraiture exhibit.  The company would be moving to a larger facility and was developing a series of patient photographs to be hung in the atrium and throughout the building to inform and inspire employees and visitors.  The unique thing was that the photo display would come with a plaque describing each person's story and experience with their disease.  This way, the viewer could gain a more complete view into each person's life and hopefully see the light they bring to the world.  The idea was intriguing so after a quick check with the girls we said "Yes!"

Levi was kind enough to take the time for a couple phone calls prior to his visit so we could get to know him a bit and prepare the girls with the right clothes and color combinations.  Speaking with him also allowed us to better understand the project and his approach to working with the girls.  Having any stranger in your house can be unsettling, but having one that is also speaking directly with your children about their lives can cause even more discord.  Fortunately, because of our trust with the Amicus team and Levi's gentle and informative manner, all fears were set aside.

When photo day arrived and Donna and the girls were scurrying about fixing hair, finishing make-up, and finding the perfect outfits, I did what I do best.  I stayed out of the way.  If there is one thing I've learned with raising two girls, it is best to stay clear of that storm.  They always end up looking great and I am much more skilled at doing dishes, vacuuming carpet, and moving things from one room to another.  So, when Levi arrived, the house was clean, the girls looked great, and we were ready to go.

From the moment he walked in, Levi connected with the girls.  They were talking, laughing, and most of all smiling.  His goal was not to photograph them in some scenic background, but rather to capture their light within their daily environment.  So, before we knew it, our den and living room became photo studios.  Over the next several hours they moved from one room to the next with ease, sharing stories and laughter along the way.  We learned about his background, he learned about ours, and somewhere along the way I believe the girls' spirit impacted him and his comforted them.

We finished off the day by sitting around the kitchen table.  He brought along a notebook and recorder in order to ensure our girls' story and our family's story was captured in the same precision as his photos.  We began with a brief overview of Maddie's diagnosis and walked the long and winding road until today.  He wanted to understand a patient's perspective, a sibling's perspective, and a parent's perspective. While it was easy to outline the "what" of their story, dates and facts, it became a bit more interesting as he continued to ask questions like, "How did you feel about that?" From there he learned about everyone's perspective and how much impact one disease had on one family. 

By the end of the session sunset had filled the sky and nightfall was on its way.  We walked Levi out to his car and helped him pack up.  We weren't sure what to expect when the first request came in, but by the end of the day we felt connected to each other.  The morning's handshake had been replaced by hugs and a commitment to represent our family's light in the best manner possible.  We started the day as strangers, but left as friends.

A few weeks would pass until the Amicus reception and portraiture exhibit opening would be scheduled.  After we received the invite and marked it on our calendar, I received a call from Levi with one last request.  In doing his research, he had read several posts from this blog, came across one with Maddie singing the song Defying Gravity (, and thought it would be the perfect message for the Amicus employees and special guests attending the event.  Maddie happily agreed and prepared with excitement.

When the day arrived, we loaded into the car and drove up to Cranbury, NJ.  As soon as we entered the building we were greeted by Amicus leaders, some friends from the Pompe community, and a series of wonderful photos from patients with Fabry, Gaucher, Maroteaux-Lamy Syndrome (MPS VI), Mucopolysaccharidosis (MPS) Type I, and of course Pompe.  As expected, each photo was accompanied by a story.  As I read each story I was impacted by the detail, the sensitivity, and the light.  These were stories of individuals, of children, of adults, and of families all sharing the same trait - living with rare disease.  Each was powerful and very well done.

Soon the event began, and after a short introduction by Amicus management, and  a greeting from the New Jersey Lt. Governor, Maddie took the "stage".  Without hesitation and without fear, she took the microphone, walked to the center of the stage and began to sing.  The room was silent as this little girl had her light shine through the words of a song and a beautiful voice.  So proud...

The day ended with a tour of the new facility and a few minutes to speak with friends. All in all it was a great success and we were honored to attend.  There are times I wonder how we ended up where we are and why my girls faces are on a pharmaceutical company's website.  However, there are others when I realize how blessed we are to have met so many wonderful people.  One of these is Levi, whose mission is explained in his quote below.

“In that way, each of these photographs represents a privileged moment, a time when I was fortunate enough to notice and receive the light another person was offering.  In my eyes, that is when the magic of photography comes to life, when we are given the opportunity to witness a single moment – precious and full of wonder – and then show it to others.” Levi George Gershkowitz         

Thank you Levi for sharing your talents with our family and thank you to Amicus for supporting such an honorable project.  Well done!  Well done!!    

Please check out Levi's photos and Maddie and Emma's "Patient Portrait" story on the Amicus Therapeutics website.  You can access the main page and see one of their photos at, a photo of Maddie at and their complete story at

I also highly recommend you visit Levi's web site at to see additional patient photos and stories.  By doing so, I am confident you will hear their voice telling you...

Can't you see the light in my eyes

All the best,

Credit to: Todd Rundgren, "I Saw The Light"

Here are some additional photos we took at the event.

Emma and Levi showing off their portrait.

Our family with a few of our Pompe friends