Being A Mum With Muscular Dystrophy

When Camilla Nielsen told her family she was pregnant again, they were worried. Really worried. Nielsen has muscular dystrophy, an inherited disease that progressively weakens her muscles. Her first pregnancy had been physically gruelling and this time she was expecting twins.

Italian photographer Claudia Gori’s documentary project "My Name is Camilla and I Love My Life" takes us inside 33-year-old Nielsen’s world five months after her daughters Esther and Agnes were born in 2014. “I put a call-out through the Danish Muscular Dystrophy Association. I originally wanted to do something about sexuality but it was hard to find a couple,” Gori told Refinery29.
“When I met Camilla, I knew immediately that hers was the story I wanted to tell.”
In the pictures ahead, we see the everyday struggles of early motherhood, made all the more demanding by Nielsen’s condition. Unable to lift her children on her own, she needs constant support. But despite the challenges, the mood of the photographs is gentle and uplifting. She might be much more exhausted than the average sleep-deprived mum but, as Nielsen feeds, bathes and soothes her children, you can feel the tenderness between them.
Diagnosed with her disability aged three, Nielsen used a wheelchair at primary school but trained herself to manage without it through intensive physiotherapy. After university, she went to work as a nutritionist in a health centre in Randers, Denmark, where she lives with her boyfriend Jesper, their elder daughter Ella, three, and the baby twins. She’d always wanted to be a mother.
“When I show this work to people, most of them are impressed with Camilla’s bravery but some say, I don’t understand why she put her children at risk,” said Gori. Because Muscular Dystrophy is a genetic condition, there’s a chance that it could have passed on to the girls. “Of course she hoped that everything would be alright, that the children would turn out to be healthy. But if not, then they’d have a life like her – and her life is beautiful.”

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