Rare Disease Day 2014: Honoring Ethan

This post is written on Rare Disease Day, to honor the memory and family of Ethan. It was written with the blessing of his family, and I hope this post both honors Ethan’s sweet little soul and also brings awareness of a terrible disease. Information on how to donate and help raise awareness is at the bottom of this post.

“Ethan was a boy made out of love and laughter. Arriving on June 12th with sparkling blue eyes and cornsilk hair, he was born into a family that adored him. He was Michelle’s sweet baby, Gordon’s only son, Sara and Amelia’s little doll. At four months Ethan’s unique gift emerged. His little baby body would produce the heartiest belly laughs we had ever heard. Pouring out of his cherubic lips, Ethan’s rolling giggles pulled everyone into his world of delight. Free from the weight of his body, Ethan will live the way that we remember him, in ethereal gazes, during quiet moments, and through unpredictable outbursts of joy. Long may that joy live, and long may we remember Ethan’s unforgettable laugh.”

Ethan_RareDiseaseDayI wish I didn’t have to write this post. I wish that sweet Ethan was still with us.

“David Ethan Klancnik, 19 months, passed away peacefully at his home in Arlington on January 29th. He was surrounded by his loving parents, Gordon and Michelle, and his wonderful sisters, Sara and Amelia.”

Ethan was born with Tay-Sachs, an always fatal disease.

I have been photographing the Klancnik Family since Ethan’s sisters were little babies. Every fall, I drive to Arlington and capture this family for a few hours- documenting them play, interact, and just enjoy a fall day.

A few months after Ethan was born, Gordon and Michelle emailed me and told me Ethan was very sick. They didn’t have a specific diagnosis at the time, but they knew something was terribly wrong. The day before our fall session, the family was given the awful news that Ethan had Tay-Sachs. I was heartbroken for all of them. During our session, things were different- they had just begun the darkest journey they would ever go on. I made it very clear to them that I would go on this journey with them, if they wanted me to. We discussed doing extra sessions, maybe in the spring and another in the fall, as they knew Ethan would get progressively worse. We’d capture him as many times as we could.


In mid-January, only seven weeks after our last session, I got another email. Ethan was already short on time. They asked if I could come soon, in the next few days. Of course I could.

On that drive to their home, I drove in silence. I thought about the Klancnik Family. How unfair it was.  I wondered how Ethan’s older sisters were handling things. I wondered how strong they were. And, selfishly, I wondered how I’d document this family again, at such a difficult time and what I’d feel. I’m usually photographing smiles and silliness. This time, I was tasked with photographing the last days of their youngest family member. I reached out to other photographers I knew who had done similar work- I drew strength from them. They told me to trust my gut- to serve the family by following my heart.

Ethan had many family members at his home with him. His parents and sisters, both of his adoring grandmothers, aunts and uncles, godparents, and cousins. They were all there to say goodbye and help this family through an unimaginable time. I wasn’t sure what I’d photograph when I walked in the door, but as soon as I entered, it was easy: love. I’d photograph love.

I wrote this in my journal after the session:

“I have been documenting this family for over five years. They are some of my very favorite people on the planet. Ethan’s mom and dad had me come to the house and document the family once again today. They knew his time was very, very short.

It was the hardest photo assignment I’ve ever done, and one of the most difficult situations I’ve ever found myself in. To keep myself composed and focused on my job as I watched a family witness their baby slip away is not something I would wish upon anyone. So many tears and difficult moments.

Yet, as I wrestled with my own grief and the sadness of witnessing the grief of another family, I was also deeply honored and humbled to be called upon to do this job; the most important I’ve ever done. I felt like I was in a very holy space. Their house was a beautiful, sacred chapel that day.

I love this family. I love Ethan.

After a few hours of documenting Ethan’s life, I kissed his forehead and toes, knowing full well this would be the last time. I prayed over him silently, hoping for a peaceful transition.

So many tears. I tried hard at first to not cry, but after being there only minutes, I knew that was impossible. Tears flowed freely from everyone in the house. I’ve never sobbed behind my camera. I did today.

Ethan, you are so loved. You are a wonderful little brother, a perfect son. You will never be forgotten.”

Two weeks after our session, Ethan earned his angel wings. When someone passes, you want to reach out and help. There’s only one thing I’m very good at, and that’s documenting families. So I went to the memorial service and documented the love in that church. It was packed- not a single empty seat. I was crying so hard during “You Are My Sunshine” that I couldn’t even pretend to mouth the words. Children made cards for Ethan and his sisters. Some brought mementos. Others came with sincere hugs and words of comfort for the family. All I could do was bring my camera.

My favorite Christmas song is kind of strange. Even though I am not particularly religious, I’ve loved it since I was a child, but now that I am an adult, I realize that the song, “In the Bleak Midwinter” is more than a beautifully sweet melody. It is a call to action. A plea for all of us to do what we can- to use our talents and gifts, whatever they are, to serve others.

What can I give him, poor as I am?

If I were a shepherd, I would bring a lamb;

if I were a Wise Man, I would do my part;

yet what I can I give him? I can give my heart.


I humbly lay my gift for documenting families down in this moment. To this family. To the other families and organizations I will likely serve in the future. It’s my gift, and I want to use it for good. For change, to help those who suffer, to support those in need.

Seeing my photos of this family printed and posted around the memorial service made my heart heavy. So very heavy. I am honored to have been able to take these photos for them. It was an absolute privilege. Yet when I think about our session this coming fall, I feel incredibly sad that one important person will not be there. Sweet Ethan.

And now I’m asking my friends, family and clients to help me honor Ethan. His parents have started an organization, Tay-Sachs Awareness and Prevention. Please donate to their cause if you can, but more importantly- read up. Learn about Tay-Sachs. Read about the myths surrounding the disease and who is a carrier. Share this with others. Get tested to see if you or your partner is a carrier.

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