It all starts before the birth of Soumiya. “When my mom was pregnant with me, we told my parents that I would not live or perhaps a few weeks, maximum,” she said RTBF. Little Soumiya was born with renal polycystosis, a genetic disease that causes large cysts to the kidneys. At four years old, its existence becomes complex. She had to be urgently repatriated from her family vacation to Morocco due to the brutal degradation of her physical state. “It was really very difficult, we were afraid,” says his mom. Suddenly, the doctors put her under dialysis and tell us that we must take the two kidneys to take off. “Fatima was a thousand leagues to imagine” that one could live without kidney. “When you see your child, so small, connected to a machine like that, it split the heart,” she recalls.
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The adventures are linked: a first kidney transplant at four years and a first rejection, quickly. “I don’t remember that moment, I was too small. But I remember many other disappointments later. This were the most difficult moments of my life: when you feel that the transplant is being rejected, that you are going to the hospital and that you are confirmed that you have to take your kidney away, ”says Soumiya. Another transplant at six years old, a new rejection; Then another at 12. “There, I was quiet all my adolescence, I really took advantage of it. I traveled, I did dance, I took advantage of my friends. They were really great years, ”she recalls. Photos of her with her friends in the bus or in dance shows immortalize these moments of happiness.
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Later, she had a hard time finding a job. “It was unimaginable for me not to work. I could have had a full invalidity board. But no, not so young, it was not possible ”. Soumiya still takes life on the right side. She gives herself the means to achieve her goals. For several years, the young Moroccan worked in Namur; She leaves early in the morning to take the train and as soon as she returns home, she plugs into dialysis. “At the time, I was doing my dialysis overnight, it lasted twelve hours. I returned at 5.30 p.m. to 6 p.m. and I was connected directly. I was eating in my bed. After the rejection of a fourth transplant in 2017, she changed work. The journeys exhaust him. She finds a suitable schedule at Brussels Expo, closer to her house. “It is difficult to find an employer when you are dialysis because they have to adapt your schedule and you are still more often absent because of the unforeseen diseases related to the disease, to the dialysis that you must do during your day. There, they were great with me, ”says the photographer.
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Licensed in 2021 for economic reasons because of the COVID-19, Soumiya does not let down by her situation. The young woman creates “warrior in pajamas”, an association of help for patients and patients with kidney failure. “I started by taking pictures of the patients and simply dialysis patients. I took the time to speak with them and them, to ask them what they and they needed. »Soumiya notably organizes photo sessions in her studio at home. Her photos are exhibited in the corridors of certain dialysis services, in particular to Saint-Luc university clinics, where it is followed. Today, she is 38 years old and is preparing for a fifth transplant. “The case of Soumiya is quite exceptional. There are few patients who are waiting for a fifth transplant, ”confirms Professor Eric Goffin. She will benefit from a cross donation. In case it does not have a success, she may benefit from a gift from a deceased person.
