Valentyn suffers from Charcot's disease, a neurodegenerative condition that nails him to his home in kyiv, on his medical bed.

His face is barely visible behind the mask of his respirator.

"You see, he is alive. Which means that I have succeeded" in finding a solution, his wife Lioudmila Mozgova told AFP, sitting by his side.

Then she recounts her terror when, at the beginning of October, kyiv found herself plunged into darkness and her husband without a respirator after the first Russian strikes on Ukrainian energy installations.

"It was torture"

Without electricity, Valentyn had to breathe for 10 long minutes alone, without assistance.

Emergency batteries connected to the respirator and medical bed of Valentin Mozgovy, paralyzed by Charcot's disease, to compensate for power cuts due to Russian bombing, January 21, 2023 in kyiv, Ukraine © Sergei SUPINSKY / AFP

"The way he was breathing (at that time), it was scary! We didn't know what to do," recalls Lioudmila.

Like the rest of the population of the Ukrainian capital, Lioudmila and Valentyn are without power for several hours a day.

So they adapted.

"His body does not move but (Valentyn) remains very alert, he gives a lot of advice. He is our captain", explains Lioudmila, whose husband expresses himself with difficulty in murmuring.

To respond to cuts, it installed a battery system that takes over to run the ventilator when the electricity runs out.

But this organization is not enough to completely reassure the couple, because they often do not know when the cuts will take place, nor how long they will last.

"I would like us to have a little stability, to know when we will have electricity", she laments, while saying she is aware that she and her husband have "the luxury" of having been able to buy their current equipment.

"It was very expensive, our children helped us. I don't even know what advice to give to those who can't afford it."

According to Iryna Kochkina, head of "Svoyi", an NGO that helps patients in palliative care, tens of thousands of people in Ukraine are in Valentyn's situation.

“If all these people suddenly could no longer be helped (at home) by the equipment that keeps them alive, and were taken to the hospital, then our healthcare system would simply explode”, says- she.

Tetyana Venglinska had no choice but to hospitalize her mother, Eva, 75, after three months of dealing with power cuts.

Tetyana Venglinska helps her mother Eva, 75, who has lung cancer, to adjust an oxygen concentrator, on January 20, 2023 in a hospital in kyiv, Ukraine © Sergei SUPINSKY / AFP

Eva, who has lung cancer, needs to be hooked up to an oxygen concentrator, her daughter says, sitting on the edge of a hospital bed in kyiv.

In order for the device's batteries to hold up during long power outages, the oxygen flow first had to be reduced.

“It was total torture for my mother,” recalls Tetyana, “Imagine! Divide your amount of oxygen breathed by three!”

And since the battery life of the device is only about eight hours, Eva's family lived in a permanent state of anxiety.

Not a small glass

My husband "was afraid to enter the room because he wondered if my mother was still alive", says Tetyana.

When Russian bombings cause a new blackout on the night of December 17, Tetyana resolves to call an ambulance and hospitalize her mother, whose device has only a few tens of minutes of autonomy left.

A decision that saved his life, because the building will remain in the end four days without electricity.

Tetyana Venglinska helps her mother Eva, 75, who has lung cancer, adjust an oxygen concentrator on January 20, 2023 in a hospital in kyiv, Ukraine © Sergei SUPINSKY / AFP

Since then, Tetyana has spent most of her time at her mother's bedside, while saying she still hopes to be able to bring her home one day.

Lioudmila Mozgova, she also believes in better days and that her husband will be there to celebrate the end of the war.

"We'll drink to victory, that's for sure! Valentyn will do it her way, with a straw, and I'll pour myself a drink," she smiles.

"And it won't be a small drink!"

© 2023 AFP