Zhenya Lomakova fears death en route to colony in court speech
The Moscow City Court sentenced 20-year-old Zhenya Lomakova, who ended up behind bars, despite an incurable genetic disease — cystic fibrosis. The judge sent the girl to a penal colony for six years on drug charges.
Before the sentencing, the girl spoke in court with her final statement. In it, she reminded that she has suffered from an incurable disease all her life.
Cystic fibrosis leads to a gradual disruption of all organ functions and weakened immunity. The disease affects the entire body, but the respiratory system and digestive tract suffer the most. In Russia, patients with cystic fibrosis live on average to 25–29 years. Only a quarter of them survive to 18. In the US and European countries, life expectancy with this diagnosis is 40–48 years.
“I don’t need to observe it for a long time, as my disease is chronic and incurable. It can only be maintained and death slightly delayed. My lungs will gradually stop functioning, I will start suffocating… And to postpone this moment, I take pills to support my liver and kidneys, because primarily these organs suffer from the large amount of medication,” she said.
Zhenya added that she uses a stationary inhaler daily and undergoes therapy to make herself feel at least a little better. She takes the device with her, including when leaving her cell in the pre-trial detention center. Currently, the therapy costs 1.5 million rubles ($15,000 at current rates) per month, as the fund provides for patients only up to age 20.
Lomakova does not know how she will survive the transfer to the colony. She will not have any medications or inhaler at hand. Prisoners have their belongings taken away during this time, and medications must be stored in the cold.
“On the way to the colony in the train, I won’t be able to perform the necessary procedure, I could simply die. There won’t be an outlet to plug in the inhaler. I won’t have any medications at all. The escort will take everything according to regulations,” added Zhenya.
According to Zhenya Lomakova, she has understood all her life that she could die. She said that she wanted to help her parents and not be a burden to them.
“I wanted to help my mom, because in 2023 she had a heart attack and was paralyzed. Until that point, I was studying in college in my final year, meaning graduation year, diploma defense, preparing for exams. I also found out that I would be provided with expensive therapy only up to age 19,” added the girl.
During a conversation about her acquaintances with the same disease, the girl could not hold back tears.
“We have a chat with the guys. Every year someone dies because they don’t wait for this therapy. They go to court, someone dies at 22, someone at 25. I understand that this awaits me too,” after these words, Zhenya cried.
During a search in 2024, operatives found packets with drugs in Zhenya’s room. According to her, she worked as a “drug courier” for a couple of months but “came to her senses in time.” And everything found on her, she kept for herself.
“I saw videos of how people even rot, how they become disabled, unable to live fully. I don’t want to be an accomplice to someone’s death or someone’s problems. I started using drugs because it’s really hard to cope with what’s happening in your life. The constant struggle with my illness, my mom’s illness, and so on,” said Lomakova.
In court, Zhenya asked for a suspended sentence. She said she was ready to check in “even every day” for 10 or 15 years in a row and be under control, but continue living.
In February 2025, journalist Taisiya Sheremet died from cystic fibrosis, she was 22 years old. She ran a blog about her battle with cystic fibrosis and the “war for medications” in Russia. She wrote that she wanted to live until summer 2025, when the new drug she needed would become available.
We also told the story of Ilya Vlasov from Volgograd, who learned about his fatal diagnosis at age 6 and has been fighting cystic fibrosis all this time.
