Dance Photography: An Inspirational Dance Portrait Session with Jules
Hi friends and fellow dance enthusiasts! Thanks so much for stopping by! I am beyond honored to share this special dance portrait session with you and hope that you are as inspired as I was when I met Jules and learned her story. She is a beautiful person, talented dancer, and the very definition of a warrior who continues to summon incredible resilience and determination in the face of a very difficult medical journey.
I had known about Jules and that she was going through some challenging medical issues for a few years as she took dance classes with both of my daughters, but it wasn’t until their recital, when the whole class decided to modify their routine to be performed in chairs so that Jules could still participate from her wheelchair, that I really began thinking about collaborating with her to create some (hopefully) powerful images. I reached out to her mom to see if she thought Jules would be interested, and she replied that it was actually a dream of Jules’ to model and bring awareness and representation to people with medical devices and that she would love to do the session! A few days later, we met at Imagine Performing Arts Center in Oviedo Mall near Orlando, picked out some costumes, and got to work! Throughout the entire photo session, I was so impressed by Jules’ talent, joyful attitude, and willingness to have her medical devices shown. During costume changes I spoke to her mom about Jules’ journey so far, the difficult road ahead, and her dreams for the future, which I have no doubt she will make happen. In the end, we were able to create some beautiful images that I hope honor Jules’ amazing determination and perseverance, while also bringing awareness and hope to others who might be living with similar conditions.
Meet Jules!
The words below were written by her mother and shared with Jules’ permission in hopes they bring awareness and understanding to people living with chronic conditions and medical devices.
Jules, age 17, lives with a number of chronic conditions, including intestinal failure brought on by a very rare nerve condition called hypoganglionosis. She is TPN dependent (IV nutrition) and lives with a central line, feeding tube, and ostomy. Jules has had sepsis five times and has been hospitalized more in the past few years than most people are in a lifetime. Her intestines continue to have recurrent intussusceptions, which is an excruciatingly painful condition where the intestines telescope over themselves and squeeze. It leads to prolapse, where up to 8 inches of intestine will literally push themselves out of her body through her ostomy. She has learned to push them back in herself, a testament to her incredible strength and will.
Multiple specialists have told us there is no cure for her condition, so the only way to help her is through a multiple organ transplant (stomach, pancreas, small intestine, and large intestine). This type of operation has only been done 192 times since 1988. She is fortunate to have a wonderful team of doctors both in Orlando and in Miami.
Through it all, she remains active in whatever capacity she can. She's dual enrolled at a local community college and is 5 classes away from graduation, with a 4.0 GPA. She has a part-time job teaching dance and working the front desk of a local theater, which she adores. She leads the local hospital's Teen Advisory Council as president, and takes drawing and dance classes. She hopes to one day be a nurse, but with a transplant on the table, the timeline on this is up in the air. These health challenges have given her a sense of compassion, wisdom, and deep strength that is nothing short of awe-inspiring.
She is not afraid of death, but insists on LIFE - not just physically, but in every sense of the word. She pushes herself to continue to find joy and humor, and feels so grateful for the large community of teachers, family, and friends that rally around. In the midst of her trials, dance emerges as Jules' sanctuary - a place where she can unleash her emotions, strengthen her body, and momentarily escape the weight of her reality. Teaching dance part-time, she finds solace and joy in sharing her passion with others, and dreaming of a future as a nurse, where she can transform her pain into purpose. Reflecting on her love for dance, Jules shares, "Dance has become my refuge, allowing me to express myself and find peace, even if only for a few minutes on stage." In the rhythm of her movements, she finds freedom, a fleeting moment of respite amidst life's challenges.
