September 26, 2023

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‘Ukraine’s Down’s syndrome children are being left behind’

Olly has no fear. But at least he’s mobile, so we’d have a chance of getting him to a basement for safety. Many disabled people need wheelchairs, or other specialised transport, and then there’s the issue of medication. Olly takes three different drugs a day and needs a ventilator to ensure he gets sufficient oxygen while he sleeps. The chances of maintaining all this in a warzone, with power cuts, are next to zero. As I wrote this article I heard that levothyroxine, the essential drug Olly and many other people with Down’s syndrome take for underactive thyroid, has run out in Ukraine – the community are desperate for supplies.

Last week, I spoke to Jarek Pozdrowienia, a Polish disability activist and former professional basketball player, whose 16-year-old youngest son has Down’s, while his middle boy has a diagnosis of autism. 

Pozdrowienia has been putting his formidable energy and grit into helping mothers of children with Down’s syndrome escape the carnage in Ukraine, trying to find safe passage into Poland, Hungary and Romania at a time when some of the most obvious routes are blocked. He’s helped about 17 families so far and told me he’d just managed to get a mother called Helena from Karkiv and her two children (including a nine-year-old with Down’s) over the border at 5am that morning; the journey had taken 22 hours rather than the usual 14, and the friend of her husband’s who had volunteered to drive them was driving straight back to the war front to fight for his country. 

Helena’s journey was marginally better than some who had fled by car towards Poland, only to find the main border crossing had a tailback 25 miles long, mostly cars that had run out of petrol – as many as 129,000 people have crossed in a single day, and more than a million since the invasion began on February 24.

Pozdrowienia said: “Try and imagine finding yourself having to leave your car and walk 13 miles to the border in freezing temperatures, in snow, carrying heavy rucksacks, with at least one child with a disability, then standing and queuing. The strength of these women is unbelievable.” 

Because of the stalled traffic and queues he’d advised Tania, another stricken mother of a child with Down’s who’d escaped the siege of Kyiv, to leave Ukraine via Hungary. It took an arduous two days, rather than the usual flight time of two hours, to reach Budapest.

Pozdrowienia shook his head in disbelief as he said: “It’s amazing that a country like Russia, which suffered so many deaths in the Second World War, would start another huge war and do this to people who are their neighbours, their brothers.” He also said that Poland was already running short of high-quality sleeping bags and mats that can withstand minus zero temperatures, “It’s so basic, this need to be warm.”

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