“To move forward, you have to walk,” say Alla and Vasyl Vasylyshyn. Together, they have been through a lot: trials of distance, time, fears, social prejudices, thousands of kilometers on the Ukrainian Railways between Ivano-Frankivsk and Voznesensk, and all this in addition to rare diseases. But these two have become not only spouses, but also close friends and exemplary parents who are willing to do everything for their children.
Read the story of a couple in love who were not separated by the sea, mountains, or wheelchairs in the article by GLUZD.
Getting to know each other on the Crimean coast
It was in the noughties. Ukrainian Crimea, 2008, the city of Saky, a leading health resort. It was a hot summer, the architecture was intertwined with green trees, hot corn and baklava were offered on the beach, and there was a sea breeze in the air. Alla was 25, a cheerful, “sea” girl from Voznesensk who had come to the health resort. She wore glasses, had a dark ponytail, and was excited. She had planned to come here with a friend, but it didn’t work out, which wasn’t a problem, as she easily found common ground with other vacationers, in particular with Vasyl. He was a guy from Frankivsk who was quiet but quite an inventive suitor, attracting girls. Every morning, everyone had breakfast in a spacious hall at small round tables, and Alla liked to wish Vasyl “bon appétit,” a phrase he had taught her. This is how a friendship began, which would later grow into true love.
2010, winter, Saky again, the same health resort. Alla was now a slender blonde without glasses. She came with a friend and stayed in a rented apartment. Two days earlier, Vasyl had arrived at the health resort. Once, while walking through the streets of Crimea, Alla saw Vasyl with a group of friends and expected him to come over to say hello. But the guy just ran past her.
“I was shocked and outraged. How could he not recognize me, someone so beautiful? Of course, I’ve changed, but not that much! My feminine pride was seriously hurt,” Alla recalls.
But the woman didn’t lose her cool and started calling out, “Vasya, Vasya!” The man didn’t respond, so Alla resorted to heavy artillery and shouted across the entire 100-meter track, “Uzhastik!” Vasyl was startled, surprised, and immediately turned around. The thing is, “Uzhastik” is Vasya’s old nickname in video games, and only his friends knew about it.
They talked, and the guy asked Alla out on a date that same evening. The girl decided to play it safe, just in case, and invited eight (!) of her friends to come with her.
“Vasya’s jaw dropped at what he saw. But he paid for everyone. It was like a girls’ test right away. We had such a good time then that my friends wanted to come with me next time, but I refused.”
That’s how their relationship began. During the day, they relaxed together at the resort, and afterwards they walked around the city, and every evening Vasyl walked the girl home. The couple recalls the area near the resort as an inclusive town within the city. They say that everything there was adapted for people who use wheelchairs: the road was flat, there were no thresholds in the rooms, and there were ramps or elevators on the stairs. There were up to 500 people in wheelchairs at the resort with them, and only a few people, including the staff, were able to walk on their own.
After Russia’s occupation of Crimea in 2014, cooperation with the resort was terminated. From reviews on Ukrainian-language websites, we can see that the resort has gone from being a leading resort for wheelchair users to a neglected place.
Lottery of Health
Alla has type III spinal muscular atrophy (SMA). This is a genetic disease in which a damaged gene causes a person’s muscles to gradually atrophy/weaken, leading to a loss of physical control over the body. There are four types of this disease, with type III progressing much more slowly than the previous two. Often, people with this disease start using a wheelchair after reaching adulthood, but Alla has been using one since childhood. She calls it the worst lottery she has ever won, because the disease occurs in approximately one in 10,000 newborns, and for a child to develop it, both the father and mother must be carriers of this gene.
Vasyl has polyradicular syndrome – inflammation of the spinal roots. At the age of 18, he caught the flu after playing basketball in February. He recalls having a high fever and body aches, taking “flu medicine,” and falling asleep. The next morning, he woke up and his legs would not respond. They immediately went to the hospital:
“One hospital did not accept him because they did not know what to do, another refused because of the test results, and he was finally hospitalized in the Ivano-Frankivsk Regional Hospital.”
The next morning, Vasyl woke up completely paralyzed, unable to move even his fingers. He was transferred to intensive care, where he lay for several weeks, receiving symptomatic treatment because no diagnosis could be made. The threat to his life was stopped, but symptomatic treatment continued for another two months: lots of IVs, procedures, and tests. One of these tests confirmed the Epstein-Barr virus. After reacting with an irritant, this virus affects the nervous system and muscles. In fact, Vasyl’s body was burning from the inside. The family invited a professor from the capital for a consultation, after which they went to the Kyiv Institute of Neurosurgery for three months. Vasyl was given antiviral drugs, and the Epstein-Barr virus was completely eliminated from his body, but it had already done its job, so it was not possible to restore all muscle functions. So, since the age of 18, Vasyl has been forced to use a wheelchair. This virus often lives in the human body without progressing, so Vasyl says that he also “won” the lottery of health.
Continuation of a non-random story
At home, Alla and Vasyl had their own lives and many friends. He lived in the Frankivsk region, she — in the Mykolaiv region. But, they say, friends with disabilities were “closer” to both of them than others, because these people understood without explanations. And such communication was of special value. The couple meant even more to each other. But suddenly, Alla felt that for Vasyl, this was just a temporary diversion. She says there was no reason for such thoughts, but she still thought so. The girl thought about it for several days and decided to ask him directly, and Vasyl would surely refute all these fears.
“I said, ‘You know, Vasya, I don’t want to mess with your head, but I think you just need a vacation romance.’ I thought he would ask, ‘Why?’ And then I would tell him everything I had made up. And according to my plan, he would say, ‘That’s not true.’ And I would have believed everything — and that would have been the end of it.”
— But I said, “No — that’s it.” That was it — I turned around and left.
That could have been the end of the story, but something kept happening that brought these two together.
“Then he apologized to me. But really, I was the one who should have apologized, right?”
On New Year’s Eve, Alla received a message from Vasyl: “I’m sorry, maybe I offended you in some way. I didn’t mean to.”
The woman was ashamed of how badly she had treated Vasyl, and when she received this message, she wanted to disappear somewhere. But that’s how she discovered another trait of her husband — he was a gentleman.
A year later, in the same place and at the same resort, only now in the summer, Vasyl and Alla met at a disco. This time, she invited him for coffee. She says that a thought flashed through her mind: there are three sanatoriums in Ukraine where you can get a voucher, and in all these years, Alla had never managed to get treatment at the same time as her friends or other acquaintances, but for the third time in a row, she found herself in the same place as Vasyl, with a difference of two days. So maybe it wasn’t a coincidence after all?
So they decided to try again. Everything was going so well that Vasyl was not at all happy with the idea of being apart for another year. So before leaving the health resort, he said to his girlfriend:
“I’ll come to you.”
“Where?”
“Home.”
“700 kilometers?”
“Yes, 700 kilometers.”
Alla’s house was not adapted for a person in a wheelchair, so she crawled around as best she could.
“And then I came back from the sanatorium and told my dad that a boy was coming to visit me. My dad said, ‘So what?’ I said, ‘He can’t crawl.’ ‘He’ll learn,’ he said. I replied, ‘No, he needs a ramp.’
My dad didn’t do anything until I told him that Vasyl was coming on Sunday, and it was, I don’t remember, Tuesday, I think. Dad asks, “Are you serious?” I say, “Yes, I’m serious.” In three days, the ramp was poured and dried—I don’t know if he blew on it or what, but everything was done.”
Meanwhile, Vasyl and his brother Bohdan set off on their journey. Vasyl’s car has manual controls, and he is a skilled driver, but 700 kilometers is a long way, so they set off together. Vasyl’s relatives say that Bohdan and his wife Iryna are the cupids of their relationship, because they have supported such adventures more than once.
Vasyl got out of the car with a huge bouquet of roses, and everyone was shocked, they recall. Alla’s grandfather approached the young man and said:
“Vasyl, Vasyl, have you come to get married?”
Vasyl did not lose his composure: “I don’t know yet, we’ll see, I’m just getting acquainted for now.”
They spent a week together, and Vasyl invited Alla to the Carpathian Mountains. He said he had to show the sea girl the mountains. Alla’s mother agreed to a week-long trip, but it ended up lasting a little longer — a month and a half.
At that time, Ukrzaliznytsia launched a special train car adapted for people with disabilities, but it was difficult to get tickets, so either fate or Ukrzaliznytsia decided that Alla and Vasyl needed to spend more time together.
“We started traveling. Every conductor on the special train already knew our life story because we were constantly traveling to see each other,” Alla recalls.
Vasyl invited Alla to his place for Christmas and New Year celebrations. She recalls that she simply fell in love with “holy Galicia,” its carols, traditions, people, and atmosphere.
She says that when she saw the chapels and heard the dialect that Vasyl’s grandmother used to speak with his mother, her eyes lit up.
“Grandma was about 75 at the time. And she was telling Vasyl’s mother something, and I was sitting there listening and listening. And I realized that I didn’t understand anything, I didn’t understand a single word of what she was saying. And I thought, dear mother, where have I ended up? How I want to learn at least one word. “Rondel,” ‘roscal’ — they’re all the same to me, and “kantsuriki,” my God… But it was really cool. I’ve been living here for 12 years now, and those first memories are still vivid.”
This euphoria was preceded by another event — an engagement.
On New Year’s Eve, Vasyl proposed to Alla, but even that wasn’t without incident.
“We have a homemade elevator at home that goes from the first floor to the second floor, and it was already late, after midnight, and we had celebrated New Year’s Eve. I took a bottle of champagne and invited Alla upstairs, but she looked at me in surprise and said, ‘Vasya, it’s already nighttime, I don’t want champagne’. I thought, ‘Oh well…’ But somehow I persuaded Alla to come with me to talk, and I proposed to her, and fortunately, she agreed.”
In February, we had a wedding ceremony, in the summer we went to Crimea again, to the sea and to a health resort, and on September 8, we celebrated our wedding. First, we had a church wedding in the Ivano-Frankivsk region, and then, on September 22, we had a civil wedding in Voznesensk. Two celebrations to bring the whole family together.
Family life with elements of wonder
“Family is when you go into the unknown, not knowing at all what awaits you, but there is a good rule: to move forward, you have to go. And to change something in your life, you have to try to change,” Alla shares.
There were many challenges and uncertainties. Four months after getting married, Alla felt that her health was deteriorating. She blamed it on climate change and stress, and went to see a doctor. And then, miraculously, she found out she was pregnant. She had previously been diagnosed with infertility, so she and her husband had not even considered this possibility. Suddenly, there was such joyful news, but also great responsibility. Alla’s disease is rare but genetic, so the first thing she and Vasyl did was get tested. Geneticists assured the couple that everything was fine, that they were having a boy, and that he would be born a little prematurely.
That’s what happened. She gave birth at the Mykolaiv Perinatal Center for People with Disabilities, where she had a C-section. She remembers that it was physically difficult not only during pregnancy but also after it. Nazar spent several days in intensive care. In the first months after the birth, Alla’s mother helped her. The new parents came up with a life hack for rocking the baby: they put a pillow on their knees, placed the baby on it, and rocked the wheelchair back and forth.
A few years passed, and the miracle happened again. Alla became pregnant for the second time, this time with a daughter. She also gave birth to Diana in Mykolaiv, after which the family returned to the Carpathian region. Nazar is now 12, and Diana is 7.
Vasyl says, “They are still young, but both are very mature and always help us.”
They had to grow up quickly. Vasyl recalls a situation: Nazar was 8 years old at the time and had developed sinusitis. His father took him to the children’s hospital, but there was no ramp or elevator. So the boy went to the doctor by himself, and Vasyl had to wait for his son outside the door. The next few times, Nazar’s grandmother, uncle, or aunt went with him.
When Diana had a holiday performance at kindergarten, her grandmother came to see it because, unfortunately, it is also impossible to get into the building in a wheelchair.
Alla says that it hurts them that they cannot always be with their children, but they are glad that they are not alone, that their grandmothers and other relatives are always with them. Until 2022, the family traveled to Voznesensk every summer to visit Alla’s parents, but now, due to Russian shelling, they see each other less often, and their grandmother comes to visit them.
Vasyl and Alla say that their parenting involves a lot of everyday routine. They say that the children sometimes argue with them and with each other because they are both leaders and have a “touch of childish selfishness” in their characters.
“Everyone needs attention and care. When we sit down to do our homework, Diana sits here and we calculate 13 minus 8, and Nazar sits here and asks, ‘What is an integral?’. And I sit here and think — motherhood.”
Equality, humor, and the power of example
Recently, the couple held an educational lesson at one of the schools in Frankivsk, where they talked to students about equality and inclusion.
“I always tell everyone this, but it’s hard for me to accept that I have to prove something to someone, that I’m not a person with special needs, but just a person,” says Alla.
But the conversation with the children went very well, she says, they are all simple, open, and sincere. The children immediately started asking about the electric wheelchair and asked to ride it, to which Alla replied, “Should I switch seats?”
“I turned it all into laughter. And I realized that I needed to communicate with children in this playful tone. And in general, it’s much easier to explain things with humor, both for children and adults, I think.”
The children asked why Alla was not a “person with disabilities” if she could not walk. The woman replied: “Well, look, you have an elevator at school, right? If there were only stairs, I really wouldn’t be able to come to you. But if you give me certain conditions, I can come to you, talk to you — and my wheelchair doesn’t affect that.”
The couple not only conducts but also attends training sessions and discussions on the concept of disability. In particular, they attend events organized by the public association “League of the Strong.”
They live in a two-story house and, with the help of friends, designed and built a homemade elevator that removed the key barrier in any home — stairs.
“We prove with our lives that a wheelchair is not an obstacle to what you dream of. And you can always come up with something, find a way around the situation,” says Vasyl.
She says that sometimes people need to be shown or told that there is always a way out. That is why organizations such as the League of the Strong are so important, because in addition to physical assistance, they provide a platform for conversation. This allows people to support each other with words, examples, and their own experiences.
Poetry as a way to support yourself and those around you
Alla is a poet, and Vasyl is an IT specialist and website developer. Together, they run her Facebook account, where they publish texts. Vasyl helps his wife with the technical side of things — he uses AI to create songs and edit videos. In September, they presented their first collection of poems, “Where Hope Lives.” People were the impetus for this. Alla has been writing poetry since her youth, but she never published it anywhere. In 2022, she felt that she wanted to share it to support Ukrainians who are afraid and in pain. Her poems are about religious themes, struggle, and human strength. She says they are, in a way, poetic parables that she wrote as a diary to better understand her experiences.
At first, she only shared texts, then she started recording videos, but she only filmed herself from the waist up, not thinking it necessary to show anyone her wheelchair. But she faced a barrage of criticism, as if she had no right to talk about struggle when her life was so easy. So, at a family meeting, they decided to show and tell the Facebook community about their inclusive family.
“I say, ‘Vasya, let’s go out into the world, because I believe I have every right to say in my poem: don’t give up, just don’t give up. Because I’ve been through it. And I want people to see that someone who has lived their whole life in a wheelchair, despite a multitude of limitations, still lives, still strives for something, and still achieves something in life. Why shouldn’t that be an example?”
Since then, Alla and Vasyl have received thousands of messages from people telling their stories. They have become a safe haven for them. They try to support their readers, often communicating with the mothers of fallen heroes, and Alla has dedicated many poems to them. They sell collections through social media, and Nazar and Diana deliver orders to the post office.
They don’t forget to relax between work. They recently went to Bukovel to breathe the mountain air. The children wanted to ride the Ferris wheel. Alla joked with the employees and asked if they could take a ride. They didn’t miss a beat and offered to let them try. They asked how to raise the seats and helped Alla and Vasyl get into the cabins with their children. The couple has had many such spontaneous and exciting adventures.
However, things don’t always go so well. Once, someone wanted to help Vasyl get into a vehicle and accidentally broke the side of his chair. They say this has happened more than once, and it’s even a little funny to remember. Still, they ask: if you want to help, that’s great, but first find out how to do it properly.
The couple recalls that back in 2008, neither of them could have imagined that they would become a family that would experience so many bright and wonderful things. Despite the trials and tribulations they faced in life.
“Through our own mistakes and bruises, we answered the question ‘Will it work out or not?’, but we wouldn’t have known if we hadn’t tried,” the man shares.
He says that his Alla is an incredible woman, a talented poet, and a caring mother.
Alla says that Vasyl is much more than family to her – he is her best friend. He is someone she can rely on and hide behind when necessary.
“First of all, I told him, ‘You are my friend.’ And he was so offended, saying, ‘How am I a friend? How can I be a friend? We are dating!’ At first, he didn’t understand why it was important for me to have someone close to me as a friend. But over time, when we got married and lived together, we both understood the importance of our friendship. Because love is wonderful, but it also involves great trials of routine and life situations, and without a strong friendship in a relationship, it is very difficult.”
They went through many trials alone, but now they live happily and overcome everything together because they found each other in this world. She is a poet; he is an IT specialist. Alla loves fiction and the songs of Iryna Bilyk, while Vasyl loves energetic music and, even more so, loves her. They love watching movies together, but they don’t have enough time. Vasyl jokes that he loves Alla so much that the first movie they watched in six months was The Notebook. He is a calm person, but give her a reason, and she will talk to anyone.
“Imagine, we came on a date, he is silent, and I am silent. Well, someone has to talk. I swear, I couldn’t stop talking.
Despite the distance, time, routine, sea, and mountains, they are still together. And this decision was the best one they could have made.
This material was created with the financial support of the German Federal Foreign Office (GFFO), CBM, and the European Disability Forum. The views expressed in this material are those of the authors and cannot be considered the official opinion of the financial partner and the European Disability Forum.
Journalist: Ulyana Fenyak
Photo: Ksenia Danyshchuk