Ilya, 16 years old
But I don’t lose heart, because music and drawing bring me so many happy moments in life. When I feel sad, I pick up my flute or sing. My dearest dream is peace in Ukraine! I really want children not to die and adults not to suffer… And also, since I was about 10, I’ve had a little dream—I really want to go to Disneyland! I hope that someday my dreams will definitely come true!
Hello! This is Ilya’s mom, Olena. I’d like to tell you a little about our health issues… Ilya has had “disabled child” status since he was 8 years old. Diagnoses: at age 4, he underwent heart surgery (atrial septal defect), genetically confirmed lactose intolerance (C/C), neurogenic bladder, and mild intellectual disability. His disability status was assigned based on the combination of these conditions. In 2023, he received a preliminary diagnosis of Marfan syndrome (based on external signs of skeletal structure and posture). Confirmation requires very expensive tests in the U.S. Doctors said this isn’t necessary, since the syndrome is incurable. Only the conditions caused by the syndrome are treated… In March 2024, he underwent surgery related to neuromuscular dysfunction of the bladder. However, the stoma became obstructed on both sides, necessitating a repeat surgery in July 2024. Currently, the child has a permanent urostomy, which, unfortunately, does not function properly, so a urine bag is constantly attached to his body. For now, there is nothing more doctors can do. But we hope that medicine will continue to advance and that someday they will invent something so that these bags are no longer needed…
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