Irina O*, is 53 years old and lives in Izium, a city in Kharkiv region in eastern Ukraine located approximately 20 kilometers away from active hostilities. The frontline lies 28km from Izium with 8km of no man’s land in between. There are several bridges that lead to Izium but they face constant attacks, trying to disturb logistical routes in the area.
Irina’s life changed drastically when she was diagnosed with Konovalov-Wilson disease, a rare genetic and hereditary disease that causes excessive copper accumulation in the liver or brain. If left undetected or untreated it can be fatal.
I cannot walk unaided at all now, so I am completely dependent on others. There are no specialist doctors in Izium who could help me, so the trip to the hospital in Lozova was a matter of life and death for me.
With the support of the Ukraine Humanitarian Fund (UHF), Acted and its local partner Volunteer 68 organize transport in areas near the frontline to people with limited mobility, disabilities and elderly people who otherwise would face significant barriers to accessing healthcare.
Izium city was heavily attacked during the early stages of the full-scale invasion in 2022 and continues to be regularly affected by the war.
“The war has turned my life and our city into a constant test of endurance. Before the full-scale invasion, Izium was a cosy, green city where life went on as usual. Now it is a city scarred by shrapnel* and pain. Wherever you look, there are buildings in ruins, shattered windows and emptiness. Around 80% of the infrastructure has been damaged, and although we are trying to rebuild, the scars of war are visible at every street corner.” Irina O.
“My life was turned upside down when I was diagnosed with Konovalov-Wilson disease. It is a neurological condition and is very unpredictable: there are times when I cannot get out of bed for four days. I also experience memory loss; I can forget what was said to me mere moments ago. My husband is a war veteran; he takes care of me now. Unfortunately, he suffered a hypertensive crisis and was rushed to the hospital. I was left alone in a cold flat. We had to hire someone, she helped me by doing the groceries and cooking meals, but this is a huge strain on our modest budget.
Our living conditions in Izium are simply unbearable. Until recently, we didn’t even have windows, they were blown off during one of the attacks. They were covered with plastic for a long time. There is no heating in the flat, and after the latest attacks, the electricity went out for two or three days. The gas boiler doesn’t work without electricity, so we’re freezing. It’s a vicious cycle: all the equipment depends on electricity, which is constantly failing. Only recently a group of volunteers helped us install glass windows. There are no specialist doctors in Izium who could help me, so the trip to the hospital in Lozova was a matter of life and death for me. Public transport isn’t running, and taxis don’t want to take a bedridden woman with neurological seizures for such a long distance.”
Under this UHF-funded project, Acted supports people affected by the war in frontline areas of Kharkiv region. Assistance includes provision of cash assistance, essential goods, transport services, case management for personalized support and emergency humanitarian aid. Through its partnership with local actors, Acted is able to reach people in frontline areas while strengthening the capacities of local organizations to become more independent, resilient and self-reliant to deliver humanitarian aid.
“I was desperate; the situation seemed hopeless. I found out about the social transport service by chance from a friend at the hospital in Izium. When they arrived in a specialized vehicle, I felt a huge sense of relief. Despite the difficult journey and delays at checkpoints, they did everything they could to ensure I got to my doctor’s appointment on time and returned home just as safely. For me, this help is not just transport, but my only link to the outside world and my hope for at least some improvement in my health.”
“Because of my illness, I hardly ever get out of bed and never go outside. My whole world is confined to the four walls of this room. When the lights go out, it gets dark and very scary, because I can’t even look after myself. My life is one of constant waiting: waiting for the light, waiting for my husband to come home from hospital, waiting for someone to help. Living in such conditions with a disability isn’t just difficult; it’s a daily struggle for survival.
The biggest struggle is the complete loss of independence. Because of Konovalov-Wilson syndrome, I can’t just get up and go out to buy bread or pop to the pharmacy. My life now depends entirely on whether the caretaker turns up and whether my husband is discharged from hospital. I’m not very familiar with the internet, though I do try to keep in touch via mobile. Many people like me simply don’t know where to look for help. I only found out about your organization through word of mouth whilst queuing to see the doctor. If it hadn’t been for that, I’d still be sitting at home, not knowing how to get to the clinic for a check-up.
“Thanks to Acted’s support, the ‘Volunteer-68’ team was able to organize transport at short notice. For me, it was a real lifesaver. Despite difficult road conditions and delays at checkpoints, the drivers managed to get me there right on time for my appointment. I could see how worried they were that I might be late, as postponing the appointment with the specialist was simply out of the question. They showed incredible care: they made sure I was comfortable on the journey, and then drove me right back home, right to my doorstep. Given the current situation in the country, nobody owes me anything, but these people did everything they could for me. Now I know that even on the darkest days, I can count on support.”
“I was able to receive medical care in good time, which is vital given my diagnosis; without this transport, I would simply have been stuck at home with no chance of seeing a specialist. Secondly, it lifted a huge financial burden from our family, as a taxi would have cost an incredible amount of money, which we simply do not have. But most importantly, it was the moral support. I felt that I was not left alone to face my misfortune. It gave me the strength to believe that we can persevere and overcome all difficulties.” Irina shared with Acted teams.
Volunteer-68 is a trusted local Civil Society Organization (CSO) with extensive experience in case management and social transport in Kharkiv region. This Ukrainian CSO operates with adapted vehicles designed to meet the needs of individuals with limited mobility. Volunteer-68 has a strong community presence which enables rapid identification and support of people in need of assistance. Through this project, Acted provides tailored trainings as well as operational support to strengthen the capacity of local actors to provide principled and effective delivery of humanitarian aid.
For 12 months, Acted and its local partners will deliver a coordinated multi-sectoral response in 5 war-affected areas of Kharkiv region with the support of the Ukraine Humanitarian Fund (UHF). Acted and local partners, through their protection activities, prioritize people living with disabilities, elderly people and people with reduced mobility. In total, throughout the project, 40 people living in hard-to-reach frontline areas will be provided with transportation services facilitating their access to healthcare. Moreover, 50 individuals will also receive specialized protection case management services. These services will include referrals to external actors if necessary, and support may include legal aid assistance, mental health and psychological support.
*To respect the privacy of the people supported by Acted, the names in this article has been changed.
* Shrapnel refers to small pieces of metal that fly through the air when a bomb or similar weapon explodes and are intended to injure people.