Escaping the horror in Ukraine will not be an choice for a lot of disabled kids and their households

Kyiv and Lviv, Ukraine
CNN
 — 

Vova doesn’t know there’s a war raging proper exterior his window.

He doesn’t perceive the that means of the air raid sirens. He’s unaware of the destruction brought on by Russian bombs dropping on Kyiv. He simply desires to construct towers from his toy blocks and press the buttons on his mother’s telephone that make it play songs and cartoons he likes.

Vova, a pet title 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 treatment that has turn into not possible to acquire as Russian troops shut in on the Ukrainian capital, based on 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 instructed CNN.

Evacuation will not be an choice for the Komarenkos as a result of Vova’s situation makes journey extraordinarily dangerous.

“We are able to’t take him by prepare, as a result of at any second he might have a seizure and his temperature might rise. He might not all the time voice his must go to the lavatory, and he can’t be left unattended even for a minute,” Komarenko stated, including that driving can also be harmful, in case he has a seizure.

“We are able to’t even run downstairs to the bomb shelters. We principally disguise within the hall of our house, within the toilet or the bathroom,” she stated.

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 referred to as Z teplom u sertsi (Ukrainian for “With Heat within the Coronary heart”). The group brings collectively and creates help networks for Kyiv households dwelling with disabilities. Solely 20 to 50 of the 1,247 households within the group — round 260 folks in all – have been capable of flee the capital, based on Komarenko.

The European Incapacity Discussion board, a pan-European NGO, estimates there are 2.7 million folks with disabilities in Ukraine. In keeping with Inclusion Europe, one other NGO, there are round 261,000 folks in Ukraine with mental disabilities that make them extraordinarily weak to the battle.

No less than 100,000 of them, principally kids, stay in care houses and establishments. Their possibilities of getting in a foreign country are slim.

The journey out is lengthy and laborious, even for households not going through the extra problem of incapacity. For these coping with severe well being situations, it’s almost 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 stated. “She is consistently rising and her muscle mass 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 creating 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 had been sleeping of their garments, listening to the thunder of planes overhead.

“At night time Vika began having seizures. Final time she had seizures she was 5 years previous, she hasn’t suffered from seizures since then,” Chuiska stated. She believes Vika’s seizures had been introduced on by the stress of the journey and the damp situations in a few of the basements during which they stayed.

Chuiska instructed 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.

To this point, 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 observe the a whole lot 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 stated. At one level, she and Vika had been very near getting throughout the border, having secured a automobile 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 can’t stroll that lengthy,” she stated. Another person additionally provided 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, in search of a secure means out.

Olena Tsarenko, who can also be concerned within the Z teplom u sertsi group, is a type 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 previous daughter Veronika has autism and doesn’t converse. The one factor she will say is “mother.” To Tsarenko’s shock, Veronika remained comparatively calm all through the journey.

“It was a really laborious and exhausting journey and I don’t know what occurred, however Veronika wasn’t crying. However now all night time lengthy, she’s crying and she or he’s in misery,” she stated.

Tsarenko stated the choice to leave Kyiv was extremely laborious, 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 deal with my household, so my mother intuition says please, Olena, it’s essential to save Mary and Vera. However I really feel responsible … all my buddies are there. The individuals who keep in Ukraine are heroes,” she stated. Since attending to Warsaw, she has spent her time volunteering, making sandwiches for fellow refugees caught on the border and serving to organize assist for different households from the Z teplom u sertsi group.

Veronika is now getting the medical consideration and the remaining she wants. She will be able to’t specific her emotions, however Tsarenko believes her daughter understands what is going on to her residence nation.

“Daily she’s listening to this tune referred to as ‘We’ve to outlive.’ She is enjoying it on YouTube and from morning till the night she is listening, and listening many times on the telephone. And I permit her to hearken to this tune as a result of it calms her down,” she stated.