Campaign

When Russia invaded Ukraine, Jarek Pieniak swiftly realised that families who had children with Down’s Syndrome would be among those finding it hardest to escape the conflict. Jared, who’s a professional basketball player turned disability campaigner, has three sons; his oldest is studying in the UK, his middle boy has autism, while the youngest has Down’s Syndrome.

He’s been campaigning from his base in Wraclow for better support for children with disabilities for years, often working alongside the European Down Syndrome Association (EDSA) and Down’s Syndrome International (DSI). So he was only too aware of the challenges involved when trying to evacuate children who might have serious health issues and can’t cope with tiny changes in routine.

The actress and comedian Sally Phillips recently wrote in the Daily Telegraph how her 17-year-old son Olly, who has Down’s Syndrome, found the upheaval of covid lockdowns intolerable. On the first day, he missed his schoolfriends so much, he climbed out of a back window and went missing for hours. Phillips said she simply couldn’t begin to imagine how he’d cope with evacuation from a shelled city.

On top of that, there’s the pressing issues of needing access to regular medications, specialist education and suitable accommodation. And families on the move face incredibly draining physical challenges, like having to abandon a car that’s run out of petrol or is caught in a jam at the border, switching to walking for miles through freezing-cold sleet.

Then the crossing points that are deemed safest keep changing, depending on the position of Russian troops. Journeys that once took four hours can now take days. Many people switch to trains and have to travel through a number countries to reach a destination that has the right resources to support their child. All this can prove insurmountable without expert help.

Jarek has made it his mission to help coordinate efforts to bring these mothers and their children (the fathers almost always stay to fight) out of Ukraine and across the Polish border – or across to other neighbouring countries. He phoned me early on to see how the UK Down’s Syndrome Association, which I’ve run for twenty years now (my 37-year-old son Alex has Down’s Syndrome) could help his efforts, knowing our members would understand the urgency to raise funds for immediate action.

Years of experience have taught us that the swiftest and most efficient way to help families swiftly is targeted fundraising. This goes directly to people on the ground who are driving in supplies, picking up families, sorting transport, arranging accommodation, buying groceries and essential goods. Needs can change from day to day. In early March there was a sudden, desperate lack of quality sleeping bags and bed rolls, as well as medicine to regulate the thyroid, which is often taken by children with Down’s Syndrome. The cost of petrol sky-rocketed over March, hugely increasing the cost of Jarek’s and his colleagues’ road trips to collect families and drop off supplies.

Every family has a different and complex set of needs and stories can be heartbreaking. Take the nineteen-year-old mother of a seven-month-year-old baby with Down’s Syndrome requiring urgent cardiac care, who had to travel for days across Ukraine in terrifying conditions, then was collected by Jarek at the border and driven straight to hospital for an emergency appointment, where medics discovered they both had covid.

Another family crossed the Polish border on foot in freezing conditions and when they finally arrived I was sent a report saying “they are in critical metabolic shape”, requiring a wide range of dietary supplements. Every day there are hair-raising stories and, as is always the case in war, things don’t go to plan. Jarek picked up one family and only then discovered their child did not have Down’s Syndrome, as he’d been told, but was autistic, meaning the accommodation he’d chosen was no longer suitable.

So he tracked down contacts in Spain, where he knew there was far better support and facilities for a child with this particular set of needs. Then he requested permission to use our funds to transport this already-exhausted family to yet another host country – which of course we gladly gave. Improvisation and flexibility is one of our core strengths. Sometimes families don’t contact Jarek until they arrive in Poland and then he has to scramble to find emergency support for four or five children with Down’s syndrome, along with their mothers and siblings. 

So many families have now been helped, directly or indirectly, that Jarek told me, “I do not count now. For me, the critical issue is that help brings people hope.” He has also updated DA that he’s now working with friends to try and bring in more ambulances, as Ukraine has lost 550 of its own fleet.

He said, “They still need food, gluten-free products, first-aid kits, and stuff for schools.” Jarek has a metaphysical turn of phrase, his greatest sympathy is with the mothers facing the biggest challenge of their lives as they battle to get their children to safety. He told one journalist: “Try and imagine finding yourself having to leave your car and walk 22km to the border in in snow, carrying heavy rucksacks, with at least one child with a disability, then standing and queuing. The strength of these women is unbelievable.” 

Carol Boys is the Chief Executive of the Down’s Syndrome Associaton UK

The Down’s Syndrome Association have the following JustGiving appeal page for donations to help support people with DS in the Ukraine: justgiving.com/campaign/DSAUkraine

Fight for Right, an NGO that helps provide emergency support for people with disabilities in the Ukraine:  eng.ffr.org.ua/support-in-crisis/eng