There are some things in life I will never understand. That any of us will ever be able to grasp. One huge one being the suffering and sickness of children. About a week before I was to arrive at the Williams' home for a session, Katrina asked me if I could instead come to Duke hospital to photograph her family. They had found out that Søren has a very rare disease called Chronic Granulomatous Disease. Because of this, Søren's immune system doesn't function properly and he's at risk for developing life-threatening bacterial and fungal infections.
Søren has been through so much since I photographed him last October. He has had two bone marrow transplants and has gone through so many different tests and treatments. He has spent so much of his life in a hospital room, surrounded by doctors and nurses and knows more about the medical world than probably most of us.
Through all of what he and Katrina and Mark have gone through, beyond what I can imagine, the constant beat of their journey is one of resilience. Søren is truly an incredible boy. I only met him for a short period of time, but I was struck by his resilient joy. I've been following his story and continue to be amazed by his resilient smile as I see new photos of him along his journey.
I believe that we are all connected. That even though we may not be walking through the same challenges and pain as the person beside us or as Katrina and Mark who are fighting for their son's life, we are in a big way connected to the deep pain and joy of one another. I think of Søren often and how much beauty his smile embodies. He reminds me of how incredible life is. How much of a gift it is that we get to wake up and see the new sun. He reminds me to smile often and thank the sky for today. Katrina calls Søren her greatest teacher. I think he has been a teacher to so many people.
If you would like to support Søren, they have a YouCaring page where you can give money to help with his on-going medical care. Your donation helps them tremendously.