Nikolas is 7 years old and lives with his family in the Czech Republic. Born to a Macedonian mother and a Romanian father, the child was, until April this year, a child like all the others: cheerful, happy, healthy. But fate had other plans for him. He has become seriously ill and urgently needs a STEM cell transplant to survive.
Nikolas lived in the last months only through hospitals. Photo source: Bogdan Stan
“Our little boy’s life depends on the help and goodwill of those around him. Niko suffers from a rare disease and in order to survive he needs a STEM cell transplant. But, for now, there is no 100% compatible donor for him”. It is the desperate cry of parents who would do anything to save their child. “Only the power is not in our hands. And all we have to do is watch him helplessly as he dies a little bit more every day.” Bogdan Stan, the boy’s father, told Adevărul.
Illness, pain, tears, fear are common words on the lips of the two parents – Marija and Bogdan Stan – who are trying their best to save their little boy. “Niko suffers from a rare disease that affects one in 125,000 people. It’s called Chronic Granulomatous Disease, a type of leukemia if you will, a condition that prevents the immune system from fighting certain types of infections caused by bacteria and fungi. Any infection, no matter how trivial, could be fatal to Niko”, continues the father.
The news fell like a bolt of lightning in the spring of this year. “One day, Niko suddenly felt sick. We had just returned from a walk. At that time I lived in a rural area, on the outskirts of the city Praguein a house near the forest. I used to take such walks almost every day. I was thinking that clean air, grass, leaves, nature are clean health. In fact, they triggered his disease which until then had been a silent one. Specifically, the fungi that are found on the soil, on plants, on dry leaves and that affected his lungs”the father confessed to us.
Nikolas is fascinated by electricity. Behind him, a pillar he visits every day
The diagnosis that brought three lives to its knees
Arriving home, Nikolas began to breathe very hard, then harder and harder until, in a panic, his parents took him to the hospital. “The doctors told us that his lungs were only functioning at 15%. The diagnosis: pneumonia”. But this out-of-the-blue pneumonia would come with symptoms that shouldn’t have appeared. “After he was somewhat stabilized, just when I thought I was out, some spots appeared on his face and hands. Other analyses, other tests, other sleepless nights, fears and dark thoughts…”
The diagnosis was staggering, it hit the two parents so cruelly that, for a few good days, they were almost no longer human. “Marija stayed with Niko in the hospital, I went home with the youngest boy, Luka. That horrible night, the blackest night of our lives, none of us slept. We looked for information on the Internet until the morning, and when we realized what it was about, we felt that the sky was falling on us”, continues Bogdan. The two spouses went through all the emotions and states that one can experience in a lifetime in a few hours. “Fear, panic, frustration, anger, hopelessness…Thousands of unanswered questions were born then. “Why him? Why us? Why our family? What did I do wrong?”
Bogdan and Marija with Niko on a bike ride. Source: Bogdan Stan
But they hadn’t done anything wrong. The reasons were genetic and no one could have foreseen the misfortune. “Finally, they took a DNA sample from him, discovered the disease, then tested us too. That’s how we learned that chronic granulomatous disease is triggered by a genetic mutation inherited from the mother. Marija is the bearer. In the case of women, the disease does not manifest itself, so I did not know that she had this mutation. After a few days of actually grieving, crying on each other’s shoulder, we got up, wiped our tears and said ok..we can deal with this..let’s see what it is to do, how can we help him”.
After more than 50 days in the children’s hospital, Niko was transferred to a sanatorium where he continued to be treated for pneumonia. “All this time, I looked for and found an apartment in the city, far from everything that means nature. No parks, no garden, no vegetation, all just concrete. I got rid of the fungi that affected his lungs, I bought machines and devices to filter the air, to clean it, to vacuum it. I bought a dehumidifier to remove the moisture from the house, I turned the house into a sterile one. As much as I could”.
Nikolas is passionate about trains. Photo source: Bogdan Stan
“We are living a nightmare from which we never wake up”
Niko lived for a while as if in a glass globe. “In his presence I wore a mask, gloves… the house was clean, I reduced the visits of friends, I gave up the dog I had… the child was subjected to a draconian regime”, Bogdan Stan remembers.
Eventually, the infection subsided and Nikolas resumed his life. But he can’t live a normal life anymore. Because the investigations continue, his monitoring continues, so does his treatment. “Soon, we’ll have to prepare for another lung biopsy to see what stage the pneumonia is at. We are living a nightmare from which we never wake up. Our child, from a healthy, cheerful, active child, became a child addicted to procedures, devices, medicines, tests. A stem cell transplant would give him a chance at life. However, we cannot find a compatible donor”.
Nikolas tries to live his childhood to the fullest. Photo source: Bogdan Stan
While waiting for his life to be saved, Niko goes to school, plays the piano and has learned four foreign languages. “He knows he’s sick. He knows that his illness is serious. And live each day as if it were your last. He is too young to understand the enormous risks involved in this condition, he does not know that other children have lost their lives fighting this disease, he does not know that he is in the same situation. He knows, instead, that mommy and daddy are fighting to make him well again.” continued Bogdan, his voice choked with tears. “I remember how happy we all were before Niko got sick. I remember our walks to the train station. I would get on a train with him, at random, one train at a time, go one station, and then we would return with another”.
After a compatible donor is found and Niko undergoes the transplant, the family will go through more difficult times. “Basically, the hard work will then begin. Before the transplant, Niko will follow chemotherapy. His immune system will be reduced to zero. Then, through transplantation, it will be reset. There will be a time when Niko will get pneumonia again, he will also be at risk for other diseases that the “new” immune system will have to fight. Then we will see, practically, whether the transplant was successful or not”, the father also told us.
Niko, with his younger brother, Luca. Photo source: Bogdan Stan
In order for Nicolas to have a chance at life, a compatible donor must be found as soon as possible. Bogdan Stan, the child’s father makes a desperate appeal to all Romanians, whom he asks to register in the National Register of Hematopoietic Stem Cells and become donors.
Niko, surrounded by friends at the birthday party when he turned 7. Source: Bogdan Stan
“We need a compatible person. Someone with the same DNA. We, his parents, are not. The younger brother is not compatible either. But, I firmly believe that for each of us there is somewhere in this big world a twin soul. And we are looking for that of our child”, Bogdan Stan also told us.
