Vova, a pet identify for Volodymyr, is 17 and has Opitz-Kaveggia syndrome, a uncommon genetic situation that causes extreme mental disabilities. He wants round the clock care and anti-seizure medicine that has develop into not possible to acquire as Russian troops shut in on the Ukrainian capital, in response to his mom, Natalia Komarenko.
“We’re unable to get the medicines we desperately want — anticonvulsant medication Levetiracetam and Lamotrigine. He has been taking them since he was 10,” she informed CNN.
Evacuation just isn’t an choice for the Komarenkos as a result of Vova’s situation makes journey extraordinarily dangerous.
“We won’t take him by prepare, as a result of at any second he could have a seizure and his temperature could rise. He could not at all times voice his must go to the lavatory, and he cannot be left unattended even for a minute,” Komarenko mentioned, including that driving can be harmful, in case he has a seizure.
“We won’t even run downstairs to the bomb shelters. We largely cover within the hall of our condominium, within the rest room or the bathroom,” she mentioned.
Vova and his household are amongst 1000’s of Kyiv households that can’t go away the town due to well being situations.
Komarenko heads a charitable basis known as Z teplom u sertsi (Ukrainian for “With Heat within the Coronary heart”). The group brings collectively and creates assist networks for Kyiv households dwelling with disabilities. Solely 20 to 50 of the 1,247 households within the group — round 260 individuals in all — have been in a position to flee the capital, in response to Komarenko.
The European Incapacity Discussion board, a pan-European NGO, estimates there are 2.7 million individuals with disabilities in Ukraine. In response to Inclusion Europe, one other NGO, there are round 261,000 individuals in Ukraine with mental disabilities that make them extraordinarily susceptible to the battle.
Not less than 100,000 of them, largely kids, dwell in care houses and establishments. Their possibilities of getting overseas are slim.
The journey out is lengthy and exhausting, even for households not going through the extra problem of incapacity. For these coping with severe well being situations, it’s practically not possible.
Daryna Chuiska has been caught close to the Polish border along with her daughter Vika for a number of days. Vika, 10, has cerebral palsy and bronchial asthma and desperately must resume her bodily remedy.
“Vika has been with out rehabilitation for a really very long time, her situation is deteriorating,” Chuiska mentioned. “She is consistently rising and her muscular tissues don’t develop on the identical tempo, so she is beginning to lose the progress. She has began falling whereas strolling and her legs should not growing properly, she has ache in her legs now.”
The journey from their hometown in central Ukraine to the border took days and has been exhausting for Vika. Her situation has deteriorated. The pair spent a number of days hiding in basements, the place Vika developed a dry cough and shortness of breath. They have been sleeping of their garments, listening to the thunder of planes overhead.
“At evening Vika began having seizures. Final time she had seizures she was 5 years outdated, she hasn’t suffered from seizures since then,” Chuiska mentioned. She believes Vika’s seizures have been introduced on by the stress of the journey and the damp situations in among the basements by which they stayed.
Chuiska informed CNN she has secured a spot for Vika with a number household in Germany who’ve organized the essential remedy for her. However they should get there on their very own.
Up to now, Chuiska hasn’t been capable of finding transportation. Vika is severely allergic to cats, which makes it not possible for the 2 of them to comply with the tons of of 1000’s of Ukrainians who took the prepare to Poland.
“The trains and buses are filled with pets, so it’s too harmful for her,” Chuiska mentioned. At one level, she and Vika have been very near getting throughout the border, having secured a automotive to take them there.
“However the individual stopped selecting up the telephone. There’s one other choice to get to the border after which stroll for 3 kilometers, however Vika cannot stroll that lengthy,” she mentioned. Another person additionally supplied a raise — however provided that she transferred cash first. Chuiska, worrying it was a rip-off, refused. For now, they continue to be close to the border, searching for a protected manner out.
‘We’ve to outlive’
Olena Tsarenko, who can be concerned within the Z teplom u sertsi group, is a kind of who made it out. She fled along with her two daughters, her mom and Amour, the household canine.
Tsarenko and different households with disabled kids traveled from Kyiv to Warsaw after the invasion began on February 24. The prepare journey took two days, then they traveled additional by bus.
Tsarenko’s 10-year outdated daughter Veronika has autism and would not converse. The one factor she will be able to say is “mother.” To Tsarenko’s shock, Veronika remained comparatively calm all through the journey.
“It was a really exhausting and exhausting journey and I do not know what occurred, however Veronika wasn’t crying. However now all evening lengthy, she’s crying and she or he’s in misery,” she mentioned.
Tsarenko mentioned the choice to go away Kyiv was extremely exhausting, and she or he nonetheless feels responsible about it.
“I really feel like I ought to have stayed in Kyiv and labored, however I’m additionally the one one who can care for my household, so my mother intuition says please, Olena, it’s essential to save Mary and Vera. However I really feel responsible … all my pals are there. The individuals who keep in Ukraine are heroes,” she mentioned. Since attending to Warsaw, she has spent her time volunteering, making sandwiches for fellow refugees caught on the border and serving to prepare assist for different households from the Z teplom u sertsi group.
Veronika is now getting the medical consideration and the remainder she wants. She will’t specific her emotions, however Tsarenko believes her daughter understands what is occurring to her house nation.
“Day-after-day she’s listening to this music known as ‘We’ve to outlive.’ She is taking part in it on YouTube and from morning till the night she is listening, and listening repeatedly on the telephone. And I permit her to take heed to this music as a result of it calms her down,” she mentioned.
