Building a Family When Her Muscles Won’t Work

As a child, Camilla strived to conquer muscular dystrophy and leave her wheelchair behind. As an adult, two risky pregnancies took a toll on her body, but delivered the family she’s always wanted.

Building a Family When Her Muscles Won’t Work

Camilla Kjeldsen Nielsen has deep blue eyes and a sweet smile. Camilla, 33, has had muscular dystrophy since she was three years old. Muscular dystrophy is a genetic neuromuscular disease characterized by progressive skeletal muscle weakness and death of muscle cells and tissue. For women affected by this disease, pregnancy is a difficult choice. Apart from the chances of transmitting the genes that carry disease, pregnancy can increase muscle weakness. Yet Camilla took those chances.

Today, she and her boyfriend, Jesper, have three children: Ella, four, and twins, Agnes and Esther, born sixteen months ago. Camilla, who lives in Randers, Denmark, still doesn’t know if one or more of her girls will be affected by the disease, as the diagnosis can take time. Camilla’s own body is in worse condition than before the pregnancies: she often gets tired, she can’t lift her children, and she needs help twelve hours per day. But when she looks back at the risks she took, she is happy with her decision. She always wanted to experience the joy of motherhood, and having a family changed her thoughts about her disease. A few years ago the thought of being in a wheelchair permanently terrified her, but now she feels differently: if the wheelchair will give her more energy to be around her three girls, then she can sit.

“I have learned to focus on the things I can change,” says Camilla, “and not the things which are impossible to change.”

Camilla’s legs. On her right thigh she has a scar from a biopsy she had when she was three years old. Doctors use the biopsy to distinguish among different forms of muscular dystrophy.
Camilla’s legs. On her right thigh she has a scar from a biopsy she had when she was three years old. Doctors use the biopsy to distinguish among different forms of muscular dystrophy.

Camilla, now 33 and a mother of three.
Camilla, now 33 and a mother of three.

An old picture of Camilla from her first day of school when she was six.
An old picture of Camilla from her first day of school when she was six.

Camilla struggles while dressing herself. She has little strength in her arms, so she sets aside extra time to dress herself in the morning.
Camilla struggles while dressing herself. She has little strength in her arms, so she sets aside extra time to dress herself in the morning.
Camilla during her weekly session at the physiatrist. The exercises aim to stretch her muscles, release tension from them, and delay the progress of the disease.
Camilla during her weekly session at the physiatrist. The exercises aim to stretch her muscles, release tension from them, and delay the progress of the disease.
Camilla feeds twins Agnes and Esther, who are lying on the table so Camilla doesn't have to support them with her arms. When she and Jesper found out that she was carrying twins, they had serious concerns about how her body would handle it, but they believed the risk was worth it.
Camilla feeds twins Agnes and Esther, who are lying on the table so Camilla doesn’t have to support them with her arms. When she and Jesper found out that she was carrying twins, they had serious concerns about how her body would handle it, but they believed the risk was worth it.
Camilla’s oldest daughter, four-year-old Ella, playing at home while Camilla puts her makeup on in the bathroom.
Camilla’s oldest daughter, four-year-old Ella, playing at home while Camilla puts her makeup on in the bathroom.

Camilla putting on makeup.
Camilla putting on makeup.
Left: Camilla on the scooter she uses to go out. She can't walk more than few steps at a time; the scooter is the only way to move faster when she has to go out. On the right is Camilla when she was eight years old on a tricycle.
Left: Camilla on the scooter she uses to go out. She can’t walk more than few steps at a time; the scooter is the only way to move faster when she has to go out. On the right is Camilla when she was eight years old on a tricycle.
Camilla with her boyfriend, Jesper Granau, in their home.
Camilla with her boyfriend, Jesper Granau, in their home.
Camilla in the kitchen while Trine, one of her two helpers, cleans the house.
Camilla in the kitchen while Trine, one of her two helpers, cleans the house.
Camilla tries to lay down so she can spend time with the twins. She can’t lift her children, so laying down is the best way to hug them.
Camilla tries to lay down so she can spend time with the twins. She can’t lift her children, so laying down is the best way to hug them.

Camilla takes a shower on a small chair. Washing herself can be a strain on her muscles.
Camilla takes a shower on a small chair. Washing herself can be a strain on her muscles.
Camilla feeds one of the twins while Jesper checks sleeping Ella on the sofa. Jesper works in a city an hour away from Randers. When he comes home, he helps Camilla take care of the girls.
Camilla feeds one of the twins while Jesper checks sleeping Ella on the sofa. Jesper works in a city an hour away from Randers. When he comes home, he helps Camilla take care of the girls.
Camilla leans on a wall to support herself while in the elevator at the hospital.
Camilla leans on a wall to support herself while in the elevator at the hospital.
Camilla plays with Ella, who climbed the wheelchair to hug her mother.
Camilla plays with Ella, who climbed the wheelchair to hug her mother.

* * *

The photo essays featured on Narratively this week were originally developed as part of Family. Life. a collaborative student project initiated by Syracuse University’s Newhouse School. The project explores the feelings, relationships, obstacles, and identities of families through visual stories produced by photography schools around the world.