Chronically ill in Ukraine at serious risk amid rolling blackouts

By Rostyslav Averchuk

Lviv, Ukraine, Dec 2 (EFE).- The lives of chronically ill Ukrainians whose very survival depends on constant electricity supply are at risk due to the power outages caused by Russian missile and drone attacks on civilian infrastructure in Ukraine.

“Maksym depends on two things: round-the-clock care and electricity,” Liliia Leptso tells Efe as she tends to her 9-year-old son who is watching a cartoon on a laptop near his bed.

While Liliia can guarantee the former, she is worried about the latter, as blackouts in the village of Volia-Vysotska near Zhovkva have become longer and ever more frequent.

Maksym was five months old when he began losing the ability to breathe on his own and was diagnosed with spinal muscular atrophy of the first type. This neurological disorder causes a quick loss of motor neurons, which leads to muscle decay and can cause death in early childhood.

Thanks to the efforts of his mother, as well as several charity foundations, the boy has survived, relying on several electric medical appliances, most importantly the round-the-clock use of a ventilator machine.

Since Maksym is not able to speak, hear or cough on his own, the devices that assist him are also required to signal whenever he needs urgent help.

Last night was especially difficult, Liliia says: the power was off for more than 12 hours.

After the batteries of both lung ventilators ran out, Liliia started a petrol generator to power them. She is looking to buy a large power bank but is still worried about what would happen if the generator she owns breaks down or if the blackouts last longer and longer.

Despite being filled with medical equipment, the boy’s room still does not feel like a hospital ward. Paintings and toys abound while the boy’s mother frequently talks to her son.

“We are both very tender,” says Liliia, explaining that Maksym is fully capable intellectually despite the disease.

She says she was terrified in the first days of the Russian invasion, leaving the TV in the kitchen on at full volume while cuddling with her son, and listening to the news all day. She explained to him as much as she could that a war had begun.

“You don’t know what this means. It is scary. But I will do everything I can to protect you,” she told him.

Liliia recalls how she covered her son with blankets to protect him from glass shards as the windows shattered while explosions sounded nearby.

Still, she has never really considered leaving Ukraine.

“It is my home, my country. Besides, I wouldn’t be able to guarantee on my own the same level of care abroad.”

Here, she can rely on the assistance of a nurse. She gets water from a well and keeps the house warm with firewood ovens.

“If we compare our situation to what has happened elsewhere in Ukraine, we cannot complain.”

Liliia is in touch with other parents whose children have the same illness as Maksym. She even offered a place in her home to a girl whose condition deteriorated after spending two months in occupied Kherson.

“For these children, every moment without adequate care can have grave consequences,“ says Liliia.