By the age of 35, Olesya Radushko's lips and fingers were not ossified. For twenty years she has been bedridden and cannot even move. Olesya does not complain and does not fall into despair, because her heart and mind are not ossified, but next, as she says, is God.
Girl from Kemerovo
Olesya's childhood was as ordinary as that of the majority - happy. At first, the family lived in Belarus, then moved to a village near Kemerovo.
“I helped my parents with the housework,” Olesya recalls. “I fed chickens and rabbits, watered the beds, and nursed my two younger brothers and sister. Like all children, she ran and played.
At the age of four, Olesya's neck stopped turning, the doctors discovered a strange neoplasm and admitted her to the children's oncological hospital in Kemerovo. The girl underwent surgery and underwent a grueling course of chemotherapy. Ten years later, she learned that her suffering was in vain, and that radical treatment was harmful.
“The hospital was a nightmare for me,” Radushko recalls. - Mom was pregnant then, and I was lying there mostly alone, without my parents.
Without any improvements, Olesya was discharged home to the village. After the operation, she began to move her arms worse, dressing herself was a problem, lifting heavy things too. A classmate wore the girl's portfolio from school, teachers pulled a fur coat over her. Then she was still walking.
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As a teenager, Olesya's leg ached after being hit. Her father took her to the hospital, and there they finally made the correct diagnosis - progressive ossifying fibrodysplasia (POF), or, as it is also called, "disease of the second skeleton."
Adult solution
At the age of 15, Olesya could no longer move and lay for days on end in her parents' house. She did not know then that she had a rare genetic disease, the doctors did not really explain anything, they themselves knew little about this disease. Olesya and her parents could only guess why it was like this with her.
“For a long time we thought it was from radiation,” says Olesya. - When we lived in Belarus, a radioactive rain fell over us.
Bedridden Olesya had no choice but to read and invent. The girl read Orthodox books and wrote poetry, she controlled rhymes and lines better than the body. At the age of 20, Olesya decided to move to a boarding house.
“I didn’t know anything about boarding schools, they didn’t write about them in newspapers then, they didn’t show them on TV,” Olesya recalls. - But I understood that death awaits me at home, there are no conditions for me, even elementary hot water is not present, and all treatment in the village is ammonia and valerian, and I need to change something.
She is really better at the boarding school. There are nurses and doctors, hot water 24 hours a day, their own social circle - not only the elderly live in boarding houses. Olesya began to attend physical therapy classes and sing in the boarding choir. She still read and wrote a lot. She sent her poems to friends in text messages.
Seven years ago, the life of the statue girl turned over a laptop. Two of her best friends raised money for it via the Internet. The keyboard drawer became her window to the big world. Previously, Olesya wrote paper letters and SMS messages to acquaintances, now communication with them via email and social networks is instant. The circle of her acquaintances widened.
“There are many different people in my life,” Olesya says. - These are people with disabilities, believers and creative people who are also published on various literary platforms. Many do not live in Kemerovo, and we maintain relations remotely.
Despite her illness, Olesya has many friends.
Magic wand
Olesya has a magic wand: on one end - a spoon, on the other - a writing pen to write on paper and press the buttons of the laptop and smartphone. It was once invented by Olesya's father. This simple gadget is the only way to communicate.
This summer Olesya Radushko lived for two weeks by the sea, in Anapa. Her friends managed to raise money for the trip, in which she was accompanied by two people.
- Anapa is a wonderful city, everything is equipped for disabled people, - says Olesya. - I walked a lot in the streets - you can drive a wheelchair everywhere - and swam in the sea on an inflatable mattress. It is very beautiful in Anapa in the evening, the city is illuminated with lights. I had a great summer.
Now Olesya enjoys autumn, which she loves more than other seasons of the year, and tries to take an armchair for walks outside the territory of the orphanage at least once a week. She is accompanied by an Orthodox volunteer Boris.
- Autumn is wisdom and many colors: green grass, red, yellow, orange leaves, blue sky, and all this is different every day, - Olesya admires. - I have many poems about autumn.
Not everyone can run-jump
From the outside it may seem: the stone body does not hurt and does not feel. But this is not the case. When a new bone is formed in the body, and the abnormal process in the body does not stop, the bone armor gets thicker every day, this is accompanied by severe pain. It is almost impossible to remove it - you cannot give injections to such patients, new bones will grow from this.
- I drink tramadol and ibuprofen, but it doesn't always help, - says Olesya. - For patients like me, prednisone is dripped into the veins abroad, it relieves the inflammatory process, but we don't have that. I don’t lie in our hospitals at all, I’m afraid of them.
The disease descends from the head and neck to the legs. Now Olesya has only lips and eyes moving on her face, her jaw has hardened a long time ago, her fingers are gradually turning to stone, they have bone formations. The chest is also ossified, it is impossible to breathe deeply, there is not enough oxygen. And nothing can be done about it: scientists are researching POF, experiments are underway, but a medicine has not been invented.
It seems that it could be worse: lying on the bed without moving and thinking that you will die. But Olesya lives, does not fall into despondency and rejoices in those little joys that happen in her life.
“Of course, I wondered why this happened to me,” she says. - I am a believer and I think that not everyone can run and jump, God gave someone a different fate.
Olesya hopes that someday a cure for the "stone disease" will be invented and saved, if not her, but young children who were recently born.
“It’s so scary for parents to look at their child and understand that you cannot help him in any way and that over the years it will get worse,” she says and asks me not to write about my father and mother, who rarely visit her. She forgave them a long time ago: because she loves, because God lives in her soul and because there is a middle brother Sasha, a close person who is always in touch.
People with a second skeleton live an average of 40 years, but much depends on care, medicine, nutrition, and many factors. Olesya “wants to live still”, correspond with friends, swing on a mattress under the southern sun and wrap up the beauty-autumn in poetry.
- Sometimes, when I have a cold, it seems that everything is bad, depression seizes (many patients with POF die of pneumonia, Olesya is afraid of this. - Author). But you pull yourself together: it will pass.
Olga Kuznetsova