Boris Trojanovic

Paris, France

He loves to travel, and his favorite color is red. He has unlikely energy, he raises us when we fall morally.

How old was your child when they were diagnosed with SIOD? 3 years old.

What were your thoughts when you FIRST learned that your child was diagnosed with SIOD? The first reaction was shock, fear, we thought we were going to lose our baby. We cried for days, praying to God that doctors were wrong and the kidney would start responding to corticoid therapy.

Tell us briefly about the medical complications that have occured because of SIOD: Boris was born before the age of 32 weeks with 1180 gr, and since the first problem we encountered was that he did not gain weight, did not ask to eat at all, screamed when he saw a light-photophobe, then did not grow. alopecia, brown spots began to appear all over the body, colds, fever even though it was not in contact with children or with people who were ill. Then a kidney problem came up and he was diagnosed.

What has your child's treatment plan looked like? Feeding on the probe, growth hormone, since when the kidney has undergone dialysis insufficiency and pressure medication, antibiotics, magnesium, potassium, bicarbonates, folic acid. Today after kidney transplantation and bone marrow autotransplantation, his treatment is as follows: immunoglobulins every 3 weeks, immunosuppressants, 2 pressure medications, magnesium, bicarbonates, folic acid, antibiotics (currently has some bacteria in the lungs), liver medicine.

What challenges does your family face because of SIOD? We were confronted with the fact that one of us has to be at his side all the time, all the treatments and therapies we prepare and give him home, and even when we are in the hospital, we learned to give injections, turn on the infusion, change the probe absolutely everything . So now that we can even travel abroad, it is very difficult to remain positive all the time and to present to our child that this life he lives is 'normal', that we have to overcome all these temptations.