Moroccan Woman Thrives Without Kidneys for 34 Years, Founds Patient Support Group

It all begins before Soumiya’s birth. "When my mom was pregnant with me, my parents were told that I wouldn’t live or maybe only for a few weeks at most," she tells RTBF. Little Soumiya was born with polycystic kidney disease, a genetic disorder that causes large cysts in the kidneys. At four years old, her existence becomes complex. She had to be urgently repatriated from her family vacation in Morocco due to the sudden deterioration of her physical condition. "It was really very difficult, we were scared," her mother recounts. "Suddenly, the doctors put her on dialysis and tell us that both kidneys need to be removed." Fatima was far from imagining "that one could live without kidneys." "When you see your child, so small, connected to a machine like that, it breaks your heart," she remembers.

The adventures continue: a first kidney transplant at four years old and a quick rejection. "I don’t remember that moment, I was too young. But I clearly remember the other disappointments, later on. Those were the most difficult moments of my life: when you feel that the transplant is being rejected, when you go to the hospital and they confirm that they need to remove the kidney," Soumiya recounts. Another transplant at six years old, another rejection; then another at 12 years old. "Then, I was fine throughout my adolescence, I really enjoyed it to the fullest. I traveled, I danced, I enjoyed time with my friends. Those were really beautiful years," she remembers. Photos of her with her friends on the bus or in dance performances immortalize these moments of happiness.

Later, she had difficulty finding a job. "It was unimaginable for me not to work. I could have had a full disability pension. But no, not so young, it wasn’t possible." Soumiya still takes life on the bright side. She gives herself the means to achieve her goals. For several years, the young Moroccan works in Namur; she leaves early in the morning to take the train and as soon as she gets home, she connects to dialysis. "At the time, I did my dialysis at night, it lasted twelve hours. I would come home at 5:30-6 pm and connect directly. I ate lying in my bed." After the rejection of a fourth transplant in 2017, she changes jobs. The commute exhausts her. She finds an adapted schedule at Brussels Expo, closer to home. "It’s difficult to find an employer when you’re on dialysis because they have to adapt your schedule and you’re still more often absent due to unforeseen events related to the illness, to the dialysis you have to do during your day. There, they were great with me," says the photographer.

Laid off in 2021 for economic reasons due to Covid-19, Soumiya doesn’t let her situation get her down. The young woman creates "Warrior in Pajamas," an association to help patients with kidney failure. "I started by taking photos of dialysis patients, simply. I took the time to talk with them, to ask them what they needed." Soumiya organizes photo sessions in her studio, at her home. Her photos are displayed in the corridors of some dialysis services, notably at the Cliniques Universitaires Saint-Luc, where she is followed. Today, she is 38 years old and is preparing for a fifth transplant. "Soumiya’s case is quite exceptional. There are few patients waiting for a fifth transplant," confirms Professor Eric Goffin. She will benefit from a cross-donation. In case it’s not successful, she may receive a donation from a deceased person.