Inconvenient boy

11-year-old Roma has a rare for children disease, myelodysplastic syndrome (MDS) or pre-leukemia. This disease can't be cured by chemo, but only the bone marrow transplantation from unrelated donor can help. Doctors from the clinic in Pisa, Italy are ready to help Roma. It’s been more than a year that Roma's waiting for BMT. People help the boy very slow, he's a silent, thoughtful boy. He could sit over a chessboard for hours, spend hours constructing Lego toys or puzzles. Roma is silent boy, but his disease cries because there's no time left.

He quietly walks into the kitchen and makes a sandwich from anything he could find – vegetables, fruits, sauces. An unusual sandwich. Roman likes cooking. He watched a culinary show on TV for hours, and is now ready to stay by the stove and experiment. He just needs to make sure that he won’t cut himself, for bleeding is dangerous.

He quietly sits and for several hours does his studies with a teacher who visits Roman at home after school. It’s really hard for him; the boy gets exhausted fast but continues to learn. Roman needs to study; he has been ill since summer 2013, but nobody has abolished the school.

He quietly plays with his small brother who could become a bone marrow donor for Roman but will not, because of incompatibility.

Roman is very quiet. That’s why, when Roman’s parents saw first bruises on his body they thought that their boy is simply being beaten at school. That children are fighting is normal. But Roman didn’t fight – Roman got ill. A quiet and seemingly predictable boy has contracted an unpredictable disease which is most often found in elderly people.

When Roman was 7 he surprised his parents with a spasm of brain vessels, four-day coma and two cardiac arrests. But he beat the disease, went to the first grade and got good credits at school. Two years later, the boy’s parents received another injection of adrenaline in the form of myelodysplastic syndrome in Roman.

This disease is very difficult to treat. Chemotherapy using regular cytostatic drugs is hardly effective and does not produce long-term remission. Roman does not need remission. He needs transplantation of bone marrow. He lives on hormonal medications which help check the aggressive development of his disease. Development of MDS means acute myeloid leukemia and, again, transplantation of bone marrow. That’s why the hormones. That’s why Roman gained 10 kilograms in weight.

And that’s why Roman gets almost no help – despite several reports on TV, Roman’s father was able to raise only 17 thousand euros in donations in more than half a year, of which 5 thousand euros has already been sent to Pisa for blood typing. He still needs to raise 100 thousand euros.

It will take very long to help Roma. He is overweight and, therefore, unhandsome. That's how human's perception works. To help a small, handsome child is very easy. As easy as forget that Roma is also a child. A handsome child who unquestionably takes hormones and gains weight to be able to live to have bone marrow being transplanted to him. He waits, quietly and patiently. But his disease is not like the boy is. There is no so much time left to raise money so "slowly". And these are not only words, it's the price of life.

Name: Roman M. Golovan, born 30/11/2003

Location: Kharkiv region

Diagnosis: myelodysplastic syndrome, reduced cellularity form