“It Hurts, But I’m Smiling”
Sergey was born a healthy baby. He grew bigger, smiled a lot, and brought joy to his mom. When he was 4 months old, he underwent a general blood test before his first vaccination and had to be hospitalized right away because of a serious form of leukocytosis. The doctors tried to calm down Sergey’s mom and kept telling her that the reason for her boy’s trouble was an intestinal infection: “This can happen to anyone”. But Sergey’s condition was getting worse, and eventually he had to be taken to the intensive care unit. At the hospital, doctors failed to diagnose him correctly. They first treated him for a chronic lung disease, then for cancer. Marina, Sergey’s mom, remembers those days as a nightmare that wouldn’t end – her son was hospitalized six times within one year, but it was all in vain.
Sergey didn’t attend preschool and stayed away from other kids when he was outside with his mom – the chance of accidentally contracting some disease and ending up in a hospital was too high for him. To get some experience of being around other kids of his age, Sergey was sent to the first grade at six, a year earlier than usual. But within the first two weeks, he found himself at a hospital again. This time he was diagnosed with whooping cough. The illness took a toll on the boy – he was sick for a year. He had to undergo immunoglobulin replacement therapy at the Russian Children’s Research Hospital. Only after this did he get better, but didn’t recover completely.
These days Sergey attends school with great pleasure when he’s not wrestling with any disease flare-ups. He’s now 14 and in the 9th grade. Sergey is a straight-A student. There aren’t a lot of boys like him these days. He doesn’t talk to his classmates about his serious disease. He doesn’t want to have to explain why he doesn’t go to the school cafeteria with them or why he doesn’t take the subway like others do. However, he has a dream – to be like everybody else. He walks fellow school girls to their homes after school and emails them homework like a gentleman. He also dreams of being allowed to go to summer camp with his classmates this year. Sergey enjoys studying English. He reads books in English and watches untranslated movies.
“It’s only the two of us in our family,” Sergey’s mom Marina tells us, “So I have to work a lot. Besides the very expensive Octagam, my son needs a lot of other prescription drugs. Trust me, he really needs this medication; without it, he wouldn’t be able to live. We received one course of Octagam from the charity quota of the Ministry of Health, and we’ve already gone through all of it. Sergey is going to need Octagam for the entire duration of his life, but its monthly cost is 120000-130000 roubles [approx. $4000-4334 US]. I don’t have a financial ability to buy it. I’m a school teacher. Sergey doesn’t remember his father at all. The last time he saw him was when he was just a year and a half old. His father doesn’t help us at all even though he knows well about his son’s problems.”
Sergey is a very patient guy. His mom recalls a story about him being asked by a doctor once why he was smiling during a painful procedure. Sergey never nags or complains. Sometimes he has to tolerate a lot – he didn’t do well under general anesthesia once, so now he has to go without it during smaller surgeries and check-ups. Sergey doesn’t want to talk to any of his close friends or relatives about his disease, but has learned a lot about it from the internet. Not long ago he told his mom that he had read online about the average life expectancy of people with his condition. He said that they rarely live past 24, and he wasn’t ready for that.
Unfortunately, Sergey’s disease really is incurable, and doctors can’t tell how long he’ll be able to live. He might live to be 40 – or 24 – and a lot depends on the continual timely therapy. Immunoglobulin replacement therapy (Octagam) gives him an opportunity to lead a normal lifestyle and to live like everybody else. We believe that this boy deserves it just like the rest of us.