Vova, Vladimir’s affectionate name, is 17 years old and has Opitz-Cavedgia syndrome, a rare genetic disorder that causes severe mental impairment. According to his mother, Natalia Komarenko, he needs round-the-clock care and anticonvulsant drugs, which have become unavailable as Russian troops close in on the Ukrainian capital.
“We cannot get the drugs we desperately need, the anticonvulsants levetiracetam and lamotrigine. He’s been taking them since he was 10,” she told CNN.
Evacuation is not suitable for Komarenko, because Vova’s condition makes the journey extremely risky.
“We can’t take him on the train, because at any moment he could have a seizure and he could have a fever. He may not always voice the need for a toilet, and he should not be left unattended for even a minute. “, – said Komarenko, adding that driving a car is also dangerous if he had a seizure.
“We can’t even go down to the bomb shelter. Basically, we hide in the hallway of our apartment, in the bathroom or toilet,” she said.
Vova and his family are among the thousands of Kiev families who cannot leave the city for health reasons.
Komarenko heads the charitable foundation “With Warmth at the Heart”. The group unites and creates support networks for Kyiv families living with disabilities. According to Komarenko, only 20 to 50 of the group’s 1,247 families – about 260 people in total – were able to leave the capital.
The European Disability Forum, a pan-European NGO, estimates that there are 2.7 million people with disabilities in Ukraine. According to another NGO, Inclusion Europe, there are about 261,000 people with intellectual disabilities in Ukraine, making them extremely vulnerable to conflict.
At least 100,000 of them, mostly children, live in nursing homes and institutions. Their chances of getting out of the country are slim.
The road to exit is long and arduous, even for families not facing the additional challenge of disability. For those who have serious health problems, this is almost impossible.
Darina Chuiskaya has been stuck near the Polish border for several days with her daughter Vika. 10-year-old Vika suffers from cerebral palsy and asthma and is in desperate need of resuming physical therapy.
“Vika has been without rehabilitation for a very long time, her condition is deteriorating,” Chuiska said. “She is constantly growing and her muscles are not developing at the same pace, so she starts to lose progress. She started to fall while walking and her legs are not developing well, now she has pain in her legs.”
Travel it took days from their hometown in central Ukraine to the border, and it was exhausting for Vicki. Her condition worsened. The couple spent several days in the basements, where Vika developed a dry cough and shortness of breath. They slept in their clothes, listening to the rumble of planes overhead.
“Vicki had convulsions at night. The last time she had convulsions was when she was five years old, since then she has not been sick again, ”Chuiska said. She believes Vicki’s seizures were caused by the stress of the journey and the dampness in some of the basements they lived in.
Chuiska told CNN that she found a place for Vika with a host family in Germany, who arranged for her to undergo crucial therapy. But you have to get to them on your own.
So far, Chuika has not been able to find transport. Vika is severely allergic to cats, making it impossible for the two of them to follow the hundreds of thousands of Ukrainians who have taken the train to Poland.
“Trains and buses are full of pets, so it’s too dangerous for her,” Chuyska said. At one point, he and Vika came very close to crossing the border, hiring a car to take them there.
“But the man stopped picking up the phone. There is another option to get to the border and then walk three kilometers, but Vika can’t walk that long,” she said. Someone else offered a ride, but only if she wired the money first. Chuiska, fearing fraud, refused. As long as they stay near the border, looking for a safe way out.
“We must survive”
Elena Tsarenko, who is also a member of the “With warmth at the heart” group, is one of those who managed to get out. She ran away with her two daughters, her mother, and Amur, the family dog.
Tsarenko and other families with disabled children were traveling from Kyiv to Warsaw after the invasion began on 24 February. The train journey took two days, then they traveled by bus.
Tsarenko’s 10-year-old daughter Veronika is autistic and does not speak. The only thing she can say is “mom”. To Tsarenko’s surprise, Veronica remained relatively calm throughout the journey.
“It was a very hard and exhausting trip and I don’t know what happened, but Veronica didn’t cry. But now she is crying all night and she feels bad,” she said.
Tsarenko said the decision to leave Kyiv was incredibly hard and she still feels guilty.
“I feel like I should have stayed in Kyiv and worked, but I am also the only person who can take care of my family, so my maternal instinct says: please, Olena, you must save Mary and Vera. But I feel guilty.. All my friends are there. The people who stay in Ukraine are heroes,” she said. Since she arrived in Warsaw, she has been a volunteer, preparing sandwiches for other refugees stranded at the border and helping to organize help for other families from the Warm Heart group.
Veronika is now receiving medical care and the rest she needs. She cannot express her feelings, but Tsarenko believes that her daughter understands what is happening to her native country.
“Every day she listens to this song called We Must Survive. She turns it on YouTube and listens from morning to evening, over and over again on the phone. And I let her listen to this song because it calms her down,” she said.