Nadia, Mykola & Lev
Nadia and Mykola come from small towns on opposite sides of the Dnieper River in southeastern Ukraine, Marhanets and Orikhiv. They met while both working at the Motor Sich factory in Zaporizhzhia, one of the largest manufacturers of airplane engines in the world. Mykola noticed Nadia’s bubbly personality when she joked with her coworkers and began messaging her on a popular Russian-language social media site. I asked Nadia if this was because he was shy? No, she laughed, that’s just the way love gets started these days.
They didn’t waste time. Soon they were married and expecting their first child, but a sonogram revealed the umbilical cord had become wrapped around the baby’s neck. Their obstetrician assured them a C-section wasn’t necessary and they could deliver naturally, but the cord was short and choked the baby, inflicting hypoxia. Little Lev spent two weeks intubated in intensive care, fighting for his life.
Today Lev is four years old and has the blue eyes of both of his parents plus his mother’s blond hair. He also has some combination of cerebral palsy and West syndrome, and like with all new parents, Lev became the focal point of their lives, with the additional complication of navigating the web of treatments, costs, and uncertainty of his care.
Nadia was staying home to take care of Lev full time, and they were doing their best to execute his rehab program, particularly important in the early childhood years, on their own. Eventually they enrolled him in a preschool for special needs children, and Nadia was preparing to return to work as a machinist at the factory so they could save up enough money for another treatment of the Ulzibat method, originally developed by a Russian doctor. The Ukrainian doctors won’t conduct this procedure, and there appears to be limited Anglophone literature on it, but they had consulted with other families who had children with cerebral palsy and were told the results were remarkable. Visiting Belorussian doctors in Ukraine perform it for around $800.
Then the war unleashed its awful chaos and destroyed all their plans, all their work to provide the best life they could for their son. They knew they had to evacuate immediately and made their way to Krakow, where a volunteer at the train station connected them to us. They’ve been staying with us over three weeks now in one of our private rooms and we’re now moving them into one of our residential flats where they can stay as long as they need.
In the meantime Mykola has found a job working 60 hours a week, 10 hours a day Monday through Saturday, at a Motorola warehouse. His mother and sister are still in Ukraine, and he is trying to convince them to come here. Helping their family get settled in Krakow for the long term would be the easy part for us.
But our focus, like theirs, has turned to trying to help them navigate a Polish health care system that has just been crammed full of 3 million new entrants. Our partner Olena Mykailovska works with Nadia regularly including attending appointments with her to translate, but we have only been able to see a primary care physician. We were able to help them find a special stroller for kids like Lev to properly support his body so Nadia no longer has to carry him in her arms, but the earliest date we could get to see a specialist, in either the public or private system, is in three months. His current medication, 500 mg of Sabril, runs out in 21 days. We think the internist will be able to issue a Polish prescription for a refill, but the larger concern is finding a child neurologist or other specialist who can prescribe and connect them to a proper program of long-term care.
This will almost certainly have to be somewhere in the EU because of the difficulty of getting them to the US, but 1) we’re not doctors and don’t know what we’re doing, so if you’re a child neurologist in the US and can advise us on how to support Lev’s short term care beyond what’s described in this story, please reach out to us, and 2) many of you reading this work for companies with European headquarters or divisions, so if any of your contacts in the EU could possibly connect us to a doctor familiar with long-term treatment programs for cerebral palsy, that would be especially helpful.
I can always be reached by email at Hewitt@StrangeStrategies.com. Thank you to everyone who has supported our effort to house and feed families like Nadia, Mykola, and Lev, which has given them some sanctuary from the worst cruelties of war.
Today is Nadia's birthday. Because of Lev's care and Mykola's work schedule, she doesn't get to leave the hotel very often, but today she curled her hair for the occasion and brought all four of us these individual cheesecakes so we could celebrate with her. Happy Birthday Nadia.
