Illustrated by Aleksandra Fedarkova
“Like everyone else, I live on a roller coaster of strong emotions. Specifically, today it hurts because after several weeks of hard struggle, I had to euthanize our cat: her kidneys failed, her condition worsened due to our move from Kyiv. Sometimes I allow myself to laugh, sometimes I literally howl, sometimes I can’t sleep because I see pictures of children killed in my country. Just like everyone who left Ukraine. My daughter is the one who gives me the strength to live, fight, and help others,” says Nia.
Nia is an entrepreneur, social activist, and mother of Eva, a child with Jamuar syndrome, a rare genetic condition found in only 30 people in the world. Due to the disease, Eva has severe epileptic seizures, and each of them “burns” part of her brain and prevents her development. Eva’s quality of life depends on a VNS chip built into her brain, a special diet, medications, and daily activities with rehabilitation professionals.
Since Nia found out about her child’s condition, she has always lived in “heightened complexity mode,” but she learned to be happy even in these conditions. The war changed everything.
Nia recalls: “On February 23 I had my own PR agency, a beauty salon, a bunch of interesting projects, volunteering, and a daughter who needed special care every day. On February 24 I had nothing left except for responsibility to my child.”
One of the most challenging things is the need for medical cannabis that can ease Eva’s cramps and severe pain. Nia and Patients of Ukraine charity have been fighting for a long time to provide these drugs to Ukrainian patients. That task has always been challenging enough, but during the war it became almost impossible to solve.
“If you are the mother of a child with a disability, you are in a double trap during the war. Due to lack of medicines and lack of mobility. My Eva can’t walk. She weighs 20 kilograms, her wheelchair is another 25. Every time a siren sounds, I need to carry them on my own arms from the 13th floor and back. That is extremely hard. Also, there’s not enough time to work with the child regularly. And epilepsy is like a fire in the brain. Once you skip a few rehabilitation sessions, and the skills that took months or even years to acquire are lost.”
A few days after the Russian invasion, Nia decided to go with her child first to the west of Ukraine, and then went to Poland. At the same time, she continued her volunteer work: “At the very beginning of the invasion, in addition to taking care of my own child, I had several other key tasks: supply of necessary medicines to families who could not leave, and evacuating those who decided to leave. We processed more than 3,000 applications for medicines and were able to transfer a 3-month supply to Ukraine. We also took 50 families to safe places. It doesn’t seem like much, but every case is a challenge when it comes to a person with a disability. Especially about palliative care children, who can only be transported in ambulances. Every rescued child is a story about the efforts of a whole team.”
In Krakow, Nia rents a house for herself and her daughter, her parents and several other relatives. She called more than a hundred real estate agents to find it. She received a rental permit only when a friend from Poland signed a contract and undertook to cover her rent in case of insolvency. According to Polish law, a family with a child cannot be evicted for non-payment, so apartment owners are looking for additional guarantees.
Otherwise, the conditions in Poland are quite comfortable: “Food, clothing—Poles help with everything, and we are grateful for that. Also, they have specialized kindergartens. So I can leave my daughter for a few hours in a safe place and go to work. I need to work because social payments do not cover the daily rehabilitation costs.”
Although Ukrainian law allows men who take care of children with disabilities to travel abroad with women, not everyone has actually used this right. Some men stayed in Ukraine and joined the Armed Forces. While they defend the country, their wives try to take care of their children and build life in a new place.
Job search is a particularly vulnerable area for Ukrainian women whose children have disabilities. They are even more attached to their child’s needs than other mothers. Full-time jobs in factories or stores are almost never suitable. Remote work would be the perfect option, but most women with whom Nia talked in Poland do not have the necessary qualifications: in Ukraine, due to the lack of systematic support for people with disabilities, they fully devoted themselves to child care and did not have opportunities for their own professional development.
So Nia tries to help them: finds useful information, looks for vacancies, and holds meetings. She says that the women she communicates with are strong but confused. Usually most of their lives were spent at home and revolved solely around the needs of their kids. Now that they are in an unfamiliar environment, they need someone to support and guide them. Someone to explain that they can learn to be a content manager, for example, very quickly. Someone to find vacancies for them. Finally, someone who would just listen to them.
“It is most difficult for mothers of adolescents and adult children with autism spectrum disorders which manifest in uncontrolled bouts of aggression. Sometimes women can’t physically hold them back, so shame and public condemnation are added to the worry for their children,” Nia says.
She adds that the meaning of her life is to help others and make the world a better place for them. She learns from her daughter’s self-control and strength, because Eva has been fighting her own war for life almost since birth.
Eva doesn’t talk, but she can express various emotions. It took Eva three years to learn to smile. After moving from Kyiv, the smile disappeared. Eva took the lack of a familiar environment and rehabilitation professionals who had become her friends very hard. Online meetings really helped. It worked: Eva enjoyed the familiar faces and then started smiling again and showing interest in the world around her.
Nia says: “For me, she is the best symbol of Ukraine: hardworking, sympathetic and kind. I believe that as soon as everything is over, Ukraine will recover just as quickly.”
The article was created with the support of the Women in Media NGO and the Ukrainian Women’s Foundation. The author is responsible for the content of the information. The information provided does not always reflect the views of the UWF.
Date of recording: April 6 – May 15
Translated by Oksana Biliavska