This Mother with Muscular Dystrophy Loves Her Life

For Camilla Nielsen, the choice of motherhood was an extraordinary risk. Over thirty-three years now, Camilla has been living a doughty life with muscular dystrophy, and she loves this life. This incurable condition progressively weakens her musculoskeletal system and the pregnancy has further deteriorated her state, as well as risking the transmission of genes. But surrounded by her caring boyfriend Jesper and three young children, Camilla has a luminous spirit carrying her from one day to the next.

In 2014, the Italian photographer Claudia Gori was studying photojournalism at the Danish School of Media and Journalism and began working on her final project around the theme of disability. Gori and Camilla lived in the same city, Aarhus, located on the east coast of the Jutland peninsula, where they would meet and an intimate friendship would be born. When Gori met Camilla through the Muskelsvindfunden (Muscolar Distrophy Association) later that year, “I found her story so powerful,” Gori wrote to me over email, “that I had no doubt that her story was the one I wanted to tell.”

Gori titles this project MY NAME IS CAMILLA AND I LOVE MY LIFE, words written by Camilla herself. While working on this project, Gori merged with Camilla’s life and soon found every moment to be ordinary and yet extraordinary. Her photographs convey a sense of beauty that is captivating and simple. Faced with the challenge of making photographs in a singular space, where Camilla and her family lives, Gori found that her creativity was pushed and she found new angles to tell this story.

When Camilla is unable to lift up her children, she lays down with them, in one such instance, she rests on the carpet to hug her twins. Gori was touched by this quiet yet passionate gesture. The photo story is filled with such fragments gently photographed and pieced together to profile Camilla. She did not want to make this a story about disability, but about the daily life of a person affected by a disability that lives everyday with a certain vigor and courage.

All images © Claudia Gori

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