Lethal unpredictability

Ilya Demeshko is 7; he is from Shostka and was infused donor’s platelets and received blood transfusions 84 times. For 42 days he was injected growth factors and hormones, for 8 days administered the highly-toxic drug Atgam which can knock out a healthy horse, and then for 4 months waited in vain for any effect. For 10 months Ilya has been receiving immunosuppressive therapy, whereas the only thing that can save the kid is transplantation of bone marrow from unrelated donor which costs 115 thousand euros and which no clinic in Ukraine can do. But in Italy, they can.

Ilya has very unpredictable blood disease: myelodysplastic syndrome or pre-leukemia. But the oncology cannot be allowed to get into the child’s weakened body, for little will save him then.

- ‘Well, Italy is my country – they will definitely help me. They are the ones who make Lamborghinis’, Ilya cheerfully puts everything in place.

The argument is bulletproof, that’s for sure. The country of supercars cannot but help the future racing driver. In front of TV cameras Ilya, of course, spins the story that he wants to be a design engineer and immediately shows his one hundred thousand millions parts from various construction sets. But all that is because Ilya has decided that his disease (which presently prohibits active sports and forces his parents to hide his bicycle and quad bike) will, for some reason, stay with him forever. That’s why design engineer, Ilya says. That’s why design engineer and racing driver, I add.

The parents do not explain Ilya his disease at all, not letting him understand and completely realize it. They’re just joking and cheering up their son. Say, here’s agile and playful Ilya lays, bedridden, for 2.5 months because of IV therapy and bad test results, and over there, behind the window, other children are running around. Even the hospitalized children are. But Ilya is lying in bed. And the parents keep joking: ‘Hey, Ilya, let’s kick the disease in that spot!’

But it was the disease which struck Ilya. That’s what he said. He says that time has come for him to go to school, but the disease struck him. ‘There was a kid walking with a rucksack, and there it came, the disease, lurked from around the corner and slapped him’, the mom tries to joke. But she’s right, for that’s how it was. During the first six years of his life Ilya rewarded his parents with just a couple of anginas and ARIs. A healthy child, by all means. And then, all of a sudden: slap!

The son became pale. But doctors said: avitaminosis. Slap! Huge bruises began appearing on his body in March 2014. But doctors said: leukemia or anemia. Slap! And then, they looked at the boy and decided: no, that’s probably myelodysplastic syndrome which cannot be cured. Slap! Slap! Slap!

But the parents keep joking. And Ilya, too. It’s easier that way. Here’s the little cunning fellow hiding under the bed, away from the parents, some important documents: abstracts from his medical history and the assignment to Health Ministry. He watches them searching for the documents and says nothing. And then, the boy charmingly smiles, showing everyone his dimples and a gap between front teeth, squints and returns the documents. He loves kidding everyone. For he’s already 7.

Also, he loves everyone in the world. At night, he secretly lets cats and dogs in his grandma’s private house. He talks his dad into taking with them all puppies at the gas station (settling for one, eventually). He cries when hearing in the bus a song about some homeless man. He jokes that it was grandma who broke the mop, not him. He grabs everything he can on the dining table to feed his animal friends in the street. He is tender and unpredictable.

Ilya’s disease is unpredictable, too: it may develop into acute myeloid leukemia, or may kill the boy before that. Because of the bone marrow deficiency, Ilya’s body produces almost no neutrophils, and therefore, it has no protective cells and runs the high risk of contracting infections and complications.

On the other hand, the constantly low level of hemoglobin increases the risk of cerebral blood vessel’s rupture. Because the hormones which he had to take and which have already changed his appearance increased the child’s blood pressure to 200/160 while the normal pressure at his age is 110/60.

- ‘He has been transfused this blood so many times and took so much donor’s platelets. We constantly risk infecting his blood with hepatitis and other off-hospital diseases. Moreover, the more transfusions he takes the higher is the risk of ‘transplant versus host’ reaction after the bone marrow transplantation (BMT) surgery, because his body may begin producing antibodies against foreign cells. But we cannot stop blood transfusions either, for Ilya won’t survive without them’, the boy’s mother Natalia Demeshko explains. She was able to raise 11 thousand euros for her son’s treatment out of the 115 thousand he needs, and has already paid 5 thousand euros to the clinic for blood typing.

Surely, Ilya has long been requiring BTM, but because of the obsolete Ukrainian medical treatment protocols the parents could not get an assignment letter for almost half-year. This is the half-year that was irrevocably lost. And for some reason, local foundations did not want to help Ilya, either. But we will help the future design engineer and racing driver.

Name: Ilya E. Demeshko, born 23/10/2007

Location: Sumy region

Diagnosis: myelodysplastic syndrome, reduced cellularity form