In 2018, EFNA ran a workshop for young patient advocates. It was one of the most positive events of EFNA’s past.
One attendee was Yulia Ostapenko, a young woman who lives with SMA3 Muscular Atrophy and Juvenile Kugelburg-Welander Syndrome.
Spinal muscular atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). People with type 3 SMA can have difficulty walking or getting up from a sitting position. They may have balance problems, difficulty running or climbing steps, and they may eventually lose the ability to walk when they’re older.
In recent days Yulia contacted EFNA. Yulia, from the Ukrainian city of Sumy, now finds herself a refugee in Wrocław, Poland- far from her home and family. Yulia has shared her story with us, so that we can begin to understand the appalling situation facing the Ukrainian people, and the particular difficulties facing those that live with chronic health conditions.
Ukraine has always been a country of kind and free-spirited people. We have only ever wanted freedom for our nation and people. While we have subjugated by many many neighbouring nations, we have never invaded any other country.
On the morning of February 24th, I was woken up not with the usual “wake up sleepyhead”, but with a cold “wake up, the war has begun”. My native land was bombed under the slogan “we will save you”, although we did not ask to be saved. Further, who are they supposed to save us from? Since independence for my country was gained after the breakup of the Soviet Union, all we ever wanted was to develop peacefully without weapons, war and bloodshed. Those who called themselves brothers of Ukraine forced me to leave my native walls with tears and fear and uncertainty for my own life and the lives of people close to me.
One day, the windows of my room opened from a strong vibration and wind, and a few seconds later, a bomb weighing some 500 kg was intentionally dropped by a Russian plane on the residential area.
My city Sumy was mercilessly bombed from the first day of the invasion. As a result of the heavy and constant bombardment, it was impossible to leave it. Those who attempted to leave peacefully were shot. The victims of these crimes were not only men, but also women and children. As a result of the inability to leave, I felt like I was in a bloody prison. I spent most of my time in the hallway of our flat which could protect me a little in the event of an air attack. One day, the windows of my room opened from a strong vibration and wind, and a few seconds later, a bomb weighing some 500 kg was intentionally dropped by a Russian plane on the residential area. In just a few seconds, 21 people lost their lives, including 3 children. These victims had hopes and dreams to the last moments of their lives. They probably read books, talked and hoped that when the war ended, they would return to life’s little pleasures such as drink coffee in a cafe or travel to experience another culture. Russia, the country of our invaders had a different value for human life. To them, it is worthless.
On the 13th day of the war, we were told that it was possible to leave the city through a pre-arranged “green corridor”. Like many, I was afraid because Russia had never kept its promises. My fears and apprehensions were confirmed as the evacuation was thwarted by tank fire. The next evacuation attempts were finally realized. On the third day, I decided to leave and asked my close friend to accompany me. In 20 minutes, I packed a small bag, said goodbye to my family and hit the road. I didn’t know where I was going, and I just had hope in my heart that I could wake up without fear for my own life.
When I arrived at the evacuation site, I was confused, as there were hundreds of fleeing people around me who were equally afraid to stay in the city under the sights of Russian military equipment and soldiers of an aggressive nation. In order to get on the bus, I went to the police and they found two seats for me and my escort. There were women and children on my bus who had to say goodbye to their husbands and fathers. Someone silently looked out the window, someone cried and promised to come back, and someone held their pet close to him, who also did not understand where his owner had gone. The road trip was very long and terrifying. On the way I saw countless tanks and other military equipment burned up. Probably these soldiers, went to the peaceful sky. Regardless, they were unlucky and died much before their time.
After a period of 10 hours, we arrived in the city of Cherkasy. We were sheltered in a regular school and treated and accepted as relatives. I went to bed on the floor of the classroom as we were given a small mattress and a blanket and pillow. I was unable to get off the floor on my own. However there were no other alternate sleeping conditions. They gave me a chair that I could lean on and use in order to lay down to rest. The next morning we were supposed to go to Lviv, but the city was covered by the sound of an alarm siren. “Well, the war has come here,” I thought. About 6 hours we waited for further evacuation. It is worth mentioning, volunteers who helped everyone for free and worked endless day and nights without any consideration for themselves. These people became really close to me, even though I saw them for the first time. There was no hostility between people, as everyone helped and supported each other. This once again showed the kindness and generosity of my fellow Ukrainians.
Three policemen put me on the train, because I could not even lift my legs on my own. Surprisingly, the crowd waited patiently for help, and I am very grateful to each of them.
At noontime, we were told to take a train to Lviv. When I got to the train station, I realized that I was exhausted, as I had only slept for a total of 5 hours in the last few days. It was -15c outside which was accompanied by a terribly cold wind. We waited for the train for approximately 45 minutes and during this time I was so cold that my legs stopped cooperating. Kind people noticed that we were very cold and brought a large thermos with hot tea so that everyone could warm up a little. I realized that I would not be able to board the train myself and I asked for assistance from the police and the station staff. As soon as the train arrived, people panicked a little and the police had to slow down so I could get on the train. Three policemen put me on the train, because I could not even lift my legs on my own. Surprisingly, the crowd waited patiently for help, and I am very grateful to each of them.
The trip was a real challenge for me. It lasted 18 hours, but I felt like I was traveling for a few days. I was sitting on a wooden bench and dying from the pain in my back. The train moved very slowly and chose the safest of routes. Heartfelt conversations with refugees like me saved me. People shared food and water with me. The gentleman next to me gave me his last sandwiches, and I shared the last cookies with him. True humanity has helped me overcome such a difficult path.
Lviv has always been associated with Christmas and the smell of coffee, but now it has become a city of fatigue and helplessness. As I passed through the station, I saw queues of people who were exhausted for miles. In order to board a train abroad, you have to stand in a queue for several days. People spent the night right in the queue to have a chance to leave Ukraine. The children cried, not knowing what was going on, and their mothers tried to comfort them and cheer them up, even though hope was dying in their eyes. I was lucky and by a lucky coincidence I was offered to go to Poland together with other people who were sick with SMA.
After 5 hours I arrived to Poland and exhaled a little. It was our European neighbours that turned out to be real brothers for us. We could not have imagined of such a huge support. I had no money, no clothes, no food, no language skills, but that didn’t stop me from feeling completely safe. Every European and many other countries in the world would like to say: “Thank you, brothers, we would not have been able to survive this unprovoked invasion without you! You all supported the determination and drive of Ukraine and made it possible for millions of children, women and the elderly to survive!”
I realized that humanity and kindness are the most precious currencies in this world.
Now I am safe, I can have breakfast in peace and not run into the corridor from the sound of shelling. I realized that humanity and kindness are the most precious currencies in this world. No one wants war, death and destruction. Like all others in this world, Ukrainians deserve to live in peace and tranquility. We want to enjoy the spring time and continue to raise healthy children. No war!
Yulia Ostapenko (@negipta)