Network of Support for Deaf and Hard of Hearing

Here is the sixth entry in my Storytelling Portrait Series this year! I will be highlighting children and teenagers who live with significant medical conditions, and telling their stories.

The Story

When Adah was just four years old, she ended up in the ER with a doctor breaking the news that she had a rare heart disease with no cure. Four months later, she was in St. Louis receiving a heart transplant! Today, she is 16 years old and thriving. She is smart, artistic, and athletic – with a huge smile! But her challenges are not over.

Heart transplants are temporary,” explains her dad, “Meaning, she will have to get another one and we were told it would typically be within 15 years. She’s also lived with immune suppression; all organ transplants do and, subsequently, this has been a challenging time during the corona outbreak.”

Because of my own history of heart surgeries, I was eager to work with Adah. Her dad suggested a theme of butterflies, since they are the symbol of heart transplants (representing “new life”). I was quickly struck with an idea – a photograph of an aerial silks artist that I saw months ago which has been in the back of my mind ever since. Would Adah be interested in attempting something similar? She was!

Behind the Scenes

Obviously, safety was my number one priority in a shoot like this. My husband is a mechanical engineer and very experienced with rigging like this. He had already hung a climbing rope from a tree in our backyard, so we shifted that over and claimed the branch for this project. We researched and experimented to come up with a way to wrap the silks around Adah on the ground before lifting her into the air. Later in Photoshop, I could remove all the safety rigging and redundancies we had in place.

Adah tracked down a unitard to wear, and had her hair and makeup done at home by a friend. I found the small plastic butterflies on Amazon, and chose my favorite to pin on Adah’s chest for the main photo.

Then it was time! We had assistants climb ladders on either side of the image, and counted down until they tossed the fabric into the air. I took many, many shots until I found the perfect shapes (then helped them a little in Photoshop). Adah was a great sport!


Adah’s name means “beautiful spirit”, and it suits her beautifully. I could not have been blessed with a more adventurous and game model for the most unusual shoot I have ever attempted!