2023-07-15 19:14:09
Axelle Van Hulle is a teenager like any other. At 21, she aspires to become Miss Belgium. Before dreaming of a coronation, the young woman must go through the stage of Miss West Flanders which will take place on September 16. A participation that already allows him to talk regarding a message that is close to his heart, that of his illness.
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Because yes, Axelle has Verhije syndrome. A rare disease. “We are 20 people with this syndrome in Europe,” she explains to our colleagues from the Nieuwsblad. The one who dreams of becoming Miss Belgium knows that she is nevertheless lucky. “In most cases, children who have the syndrome can barely speak. “Axelle, she is affected” only “a mild form. “Which means I have fewer symptoms.”
Symptoms that are diverse and varied: retarded growth and psychomotor development, facial dysmorphism, skeletal abnormalities, kidney or heart malformations… Some problems, Axelle has experienced them. “I had heart problems but it’s better. Other than that, I have flare-ups of pain and sometimes pass out without warning. But I learned to live with it, even if it wasn’t always easy. »
It is especially at the level of the waist that his illness is seen. Axel is 1m58 tall. “I took growth hormones, which allowed me to gain 12 centimeters,” she says. A size that does not prevent him from seeing things big. Because with her participation in Miss Belgium, she wants to be the spokesperson for this disease. “To be a voice for children with down syndrome who have no voice. »
She hopes that all of her story, and her participation in Miss Belgium, will help to discover new things regarding her illness. And that others do not live his situation. “I became anxious precisely because so little is known regarding the disease. I also asked myself a lot of questions. What will be the consequences on my life? How long do I have left to live? No one can answer this question. Maybe I’ll live to be a hundred years old. No one can say,” concludes Axelle.
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