She knows how to smile even when it hurts and to dream when it would be easier to give up. Since childhood, Ivanka has been used to being “strong” — that’s what everyone around her said. But over the years, she realized that true strength lies not in armor, but in the ability to allow yourself to be alive, vulnerable, and real. Ivanka is a woman who is learning to accept herself and fighting not only for her own life, but also for the rights of other people with SMA in Ivano-Frankivsk to receive medication. She is pursuing a second higher education, loves to read, and is well-versed in the written word. She actively blogs on Instagram, where she shows that people with disabilities are not just patients. She jokes wittily, runs marathons, and makes her dreams come true while listening to Imagine Dragons songs.
Read Ivanka’s story in the GLUZD article
The strength to be yourself
When you have a rare incurable disease from early childhood, it seems that being strong is a necessity, says Ivanna. Because everyone around you keeps telling you: “You can do anything,” “Be strong,” “Don’t give up.” And if everyone says so, then it must be true, right?
You have to be stubborn and strong-willed to live and fight: against the disease, your fears, and the prejudices of others. Sometimes you have to be reckless so you’re not afraid to try something new. And you have to be strong — for yourself and your loved ones, who seem to expect it. Children with disabilities are often told that they are smart and mature beyond their years. And this is true, because difficulties force people to grow up.
This is exactly what happened to Ivanka. The girl says that she is always strong because she doesn’t know how to be otherwise, but she is learning to show vulnerability. Although this also requires courage. And the non-stop struggle is very tiring. She used to prove to everyone that she was strong and could do anything, but now she wants to prove to herself that she can be not only a warrior, but simply herself. A girl who sometimes cries and wants hugs, who can be in a bad mood, who can be afraid, angry, or sad. On Instagram, Ivanka shares her story and experiences, saying that it’s like her diary, which helps her take off her armor for a while.
“They say that vulnerability is not weakness, but the courage to show yourself as you really are. And I am learning this courage every day,” the girl wrote in her blog.
Today, Ivanka is a young woman pursuing her second higher education degree, working in the public sector, and fulfilling her dreams, such as traveling to another country to see Imagine Dragons in concert or running a charity marathon. She says, “Dreams help me stay motivated.” She also confidently defends her boundaries and knows how to respond to “smart alecks” who perceive her not as a versatile personality, but as a poor patient who can’t do anything.
But she sadly recalls that while this is the case now, during her teenage years and youth, Ivanka often faced misunderstanding from friends and relatives, and it was much more difficult to defend her opinion back then.
Childhood and growing up
Ivanka was born in the mid-90s, when all the most interesting things happened in the yard. There were fights with sticks and nettles, “ambulances” with plantain leaves, and hazel leaves were used as banknotes — a childish-adult world that came to life thanks to imagination. And Ivanka was always an integral part of it.
Once, the doctors told my mother, “Your child will never stand on her own two feet.” It wasn’t that they advised her to give up on Ivanka’s future, but they insisted that she shouldn’t hope for a miracle. The family didn’t like this advice, and they did everything they could to make the miracle happen. So, as a child, Ivanka not only stood, but also walked with her parents’ support. When it was time for school, her grandfather insisted on a specialized school so that his granddaughter would be comfortable and safe, but after visiting it, her mother said, “Our daughter will study with her friends in a regular school; she doesn’t need a specialized one.” And so it happened: the girl sat at a school desk with her friends and studied there for several months. Her grandfather carried her to school every morning.
After recovering from the virus, Ivanka felt exhausted, and her parents had to transfer her to individualized education, but this did not prevent her from communicating with her peers. She is still close friends with some of her classmates, even though more than 20 years have passed.
At home, television became her best friend. She learned about the world through it and loved watching cartoons and the news. She played board games and did puzzles with her brother, which she still enjoys today. And whenever she had the chance, she would go down to the courtyard to see her friends. She says she can’t remember anything about the accessibility of the city at that time. She rarely left the neighborhood, and she felt comfortable in the courtyard next to her house. Ivanka did not communicate with other people with disabilities at all; she didn’t even know any.
“I knew they were definitely somewhere in the city. It couldn’t be that I was the only one, but somewhere subconsciously I didn’t want to meet or see them. Because I felt like I was healthy. Yes, I can’t walk, but my friends can, and so can my family. So, in that environment, I felt as “healthy” as possible and didn’t want to immerse myself in a different environment.
But when I finally met people with disabilities, sometime in 2016, everything changed. I started going places, visiting places — and that’s when I noticed the problem with accessibility. Because there are curbs everywhere, stairs, uncomfortable tables in cafes that you can’t get to, and so on.”
As a teenager, Ivanka thought about her future career. With distance learning, she had a choice between IT, law, and journalism. She chose the latter because she loved reading and was interested in news. She says that Vasyl Symonenko is still her favorite poet; she loves reading his poetry, but has never been a fan of “girly” books. She loved the analytical texts of NV because everything in analytics is concise and to the point. She liked this clarity.
She sadly recalls that the period of admission and study was very difficult, as some close friends and relatives did not support her decision at all, asking why she needed an education. Ivanka felt different from everyone else, in the worst sense of the word. She says that she did not succumb to the influence of those around her and still entered university, where she studied journalism, publishing, and editing, and simply swallowed the reproaches of those around her. Ivanka says that now she would defend her boundaries more persistently..
Until 2024, she worked as an editor for a children’s magazine, and she liked her job, but due to the financial crisis and the war, the publication ceased to exist. The girl’s own crisis began in her life — significant health complications, expensive treatment, and the need to learn to live with a new diagnosis — spinal muscular atrophy (SMA — ed.).
What is SMA?
Spinal muscular atrophy (SMA) is a disease that affects approximately 1 in 10,000 newborns. It is actually a group of genetic disorders that cause the gradual destruction of nerve cells (motor neurons) in the brain stem and spinal cord. When there are disturbances in thhe signals between motor neurons and muscles, twitching, muscle weakness, and atrophy gradually develop.
“In simple terms: we have a defective gene that causes the nerve cells that control the muscles to gradually die. This weakens the arms, legs, and back, leading to muscle atrophy. It becomes difficult for a person to move, maintain balance, and sometimes even breathe. But the mind, emotions, and feelings remain intact. We are the same people, but many of us need more help, support, and care.”
According to data from the Ministry of Health, there are four types of SMA:
Type I is the most severe and manifests itself in the first months after birth. Until recently, children with type I spinal muscular atrophy did not live to see adolescence. Thanks to expensive treatment, this terrible trend has been reversed. The state provides children and older patients with type I with drugs containing the active ingredient “risdiplam”, which stops the gene mutation.
The disease itself is irreversible, and it is not yet possible to restore the functions of the musculoskeletal system, but thanks to medication, the development of the disease stops at the stage when the person began taking it.
According to Ivanka, adult patients need to take a little more than two vials per month. The price of one vial in Ukraine is approximately 262,750 UAH. The course cannot be interrupted.
Type II — occurs in children aged 7 to 18 months and has a relatively milder progression than type I. This is the type that Ivanka has.
Type III — develops much more slowly and is the easiest to treat in children. Often, people start using a wheelchair after reaching adulthood.
Type IV — occurs exclusively in adults and, compared to type I, causes minor complications for human health.
The differences between them are the rate of disease progression and the degree of impairment of motor and respiratory functions. However, all of them cause muscle atrophy and disorders of the musculoskeletal system. All patients, regardless of the type of disease, require treatment, some of whom may receive risdiplam. As of today, the state provides it only to children and patients with SMA type I. The exceptions are certain cities, in particular Lviv, Khmelnytsky, and Kyiv, which allocate funds from the city budget to purchase medicines for patients with SMA type II. Ivanka is now an active public figure. Together with the public association “Orphan Diseases of Ukraine”, she is working to ensure that the Ivano-Frankivsk city and regional councils also provide people with SMA type II with the necessary medications.
This year, a scandal erupted online over the financial manipulations of Nazarii Gusakov, a Lviv resident with type II spinal muscular atrophy. Ivanka says that this story still does not make sense to the SMA community. It hit patients who were collecting small amounts of money for their medication the hardest, and due to people’s distrust, the process came to a halt. The girl also emphasizes the absurdity of Gusakov’s arguments, as he claimed that he did not have receipts because he bought the medicine unofficially to save money. However, according to Ivanna, purchasing the drug through state tenders is twice as cheap.
“This is because the manufacturing company has a patient support program. If, for example, a hospital purchases one bottle, the company provides an additional one thanks to a signed memorandum. I would very much like to see such scandals not happen in our country, because there would be no need to raise funds for treatment,” the girl shares.
Getting to Know SMA and Making Dreams Come True
Throughout her life, Ivanka was treated for a descriptive diagnosis that was close to SMA but generalized. As a result, the disease progressed silently, and it was impossible to prevent it. In 2022, the girl’s emotional state became unstable, and stress led to depression. Ivanka lost 10 kg, and she has not yet been able to regain her weight; she now weighs 30 kg. SMA and other orphan neuromuscular diseases cause scoliosis. Due to weight loss and muscle weakness, Ivanka’s spinal curvature was so severe that leading Ukrainian experts refused to operate. She recalls that the back pain was intense, it was painful to sit and lie down, and she constantly felt severe discomfort and weakness.
However, the girl was not accustomed to giving up and found a clinic in Finland, where she soon traveled with her mother and brother. The surgery cost €45,000. There was little time to raise the money. Ivanka decided to start a fundraiser and tell people her story on social media. She says it was quite challenging for her to write that post. But that was nothing compared to the treatment itself. She always emphasized that the priority fundraisers were and are those aimed at the needs of the Armed Forces of Ukraine, but this time, she could not do without help. The operation was urgent, and the family could not raise such an amount on their own.
The girl had to face many challenges. After the operation, there were several months of intensive rehabilitation. She counts the moment when she managed to button her jacket as one of her first victories. Everything was going really well, but then new complications arose. Again, she experienced weakness and tremors, and she couldn’t hold a fork or even lift her arms.
There is a genetic test to detect SMA. Ivanka wanted to know what was happening to her, so she decided to take the test — and the research confirmed her suspicions.
«I was very happy. Not because I have a complex disease that is more frightening than the previous diagnosis, but because there are medicines that help maintain health and prevent the disease from progressing. And I was really happy about that, even though adult patients in Ukraine don’t have access to the necessary medications.»
The girl was against the very idea of giving up. She says she didn’t get rid of the pain just so she couldn’t get out of bed now because of her illness.
«It’s all because I had an inner resistance. I’m not ready to give up. Despite various stresses and worries, for some reason, I still have a lot of love for life.»
Ivanna urgently needed Risdiplam, two vials per month, which is really expensive, and she couldn’t interrupt her course of treatment. The girl received several vials from the state.
She then wrote another post on social media about her illness and her need for medication, attaching a charity jark link. It is currently still open, as funds for the medication are needed on an ongoing basis. Thanks to the spread of the post, caring Ukrainians from all over Europe got in touch with Ivanna. They found several vials, and although some of them were expired, they still saved the girl’s health.
«And I remained on this medication for a year. The treatment and rehabilitation gave me incredible results. Why was I so impressed at the concert? Because I didn’t care that Imagine Dragons were singing there. My favorite song, “Thunder”, came on, and I was just standing in the middle of the stadium looking at the sky and saying, “God, I can’t believe that a year ago I thought I was dying, that this was the beginning of the end. I couldn’t write properly, pick up a fork or a cup, I couldn’t sit for more than two hours because I got tired, and I had to lie down. And now I’ve made my way from Ukraine to Poland, and I’m at a concert.” We returned home, and the trip was still difficult. I was bedridden for two weeks afterwards, unable to get up. However, I had enough strength to make my dream come true.»
This year, the girl took part in the Karavanets charity run at the FRANKIVSK HALF MARATHON 2025 and, together with her friend, covered a distance of 2.1 km. The organizers used all the proceeds to purchase special wheelchairs so that veterans could play basketball.
«We set many limitations for ourselves, and we can do much more if we allow ourselves to. I realized how grateful I am to myself that I didn’t give up last year, even though I was very discouraged».
Ivanna also accepted a job offer. A year ago, she couldn’t even dream of this.
«I mean, what kind of job? I have no strength at all, I can barely breathe.»
Now she is a project coordinator at a charitable foundation. She is using the money she earns to pay for her education. She is studying clinical and rehabilitation psychology. She does not dream of pursuing a career in this field, but she believes that it is useful and will help her in future projects.
«But anything can happen in 5-10 years — life is too unpredictable for me to say anything about it now.»
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She decided to pursue a second higher education in the summer, after attending a training session organized by the League of the Strong. She says that she met many wonderful people there who inspired her to move forward and achieve her dreams.
All these achievements have convinced her once again that she must not give up. That is why she continues to fight for her medication. But now all her resources have been exhausted, and her supply of the drug has run out. Ivanka no longer has any medication. She used her last vial in October. She does not know what the consequences of this break will be. Those who wish to support Ivanka financially can donate to her charity jar at https://send.monobank.ua/jar/BmMdnY4Tf?fbclid=PAZXh0bgNhZW0CMTEAAachTs8onpRX1beefvdftisJMa6uvcz0aLzmrZARSEBkfgDJpomlp2SrUFPg5g_aem_Q-5izrCohEyaGTMpZe4E8Q
«What to do next? I don’t know. Until the very end, I had hope that by the end of the year, the regional council or city council would be able to allocate at least some funds to cover this period. Or maybe the Ministry of Health will be able to purchase drugs for type 2 diabetes in the new year. As far as I know, negotiations are currently underway between the Ministry of Health and a pharmaceutical company. I am constantly in this waiting mode, thinking: a little more, just a little more. It’s extremely difficult.»
Daily Life and Support
«Right now, my biggest support is my friends, who are with me through all the craziness», — says Ivanka.
People often see her as a person with SMA and forget that first and foremost, she is a person with her own ideas, adventures, goals, and problems, and that SMA is just a disease she lives with.
«For me, it’s not just about fighting for access to treatment, but also about being able to talk about people with SMA outside the context of treatment. Sadly, some people still only see women and men with SMA as a diagnosis. But the reality is that being a patient isn’t the only thing in our lives.»
Ivanka says that she really needs 24/7 support, but it is support, not help. She walks around the city, works, and has fun on her own.
«This means that I need someone to be nearby for most of the day. I can stay at home and walk around on my own, but my limited mobility still makes me dependent on outside help. And this dependence greatly affects my mental state, so I constantly come up with new life hacks that help me be more independent».
She says she is incredibly pleased with her social circle because everything else is just everyday life, while family and friends are what real life is all about. As is often the case with young and hard-working people, work leaves little time to meet up. But messengers and memes help here, some of which Ivanka shares on her Instagram, because her blog is not only about work and SMA. Although the jokes also have their own theme.
The girl has loved intellectual games since childhood and says that when she has too much work, she literally dreams of switching gears and playing a quiz game with her friends.
For the past two years, Ivanka has been learning to support herself. She found herself in psychotherapy and admits that working with a therapist has really changed her life; she has learned to accept herself as she is. Now the girl is learning to let her guard down and show her soft side to those around her. It’s difficult so far, but she’s trying.
«I am learning to be vulnerable. All my life, I have been learning to be strong. But that is difficult and exhausting. And it is not always honest. After all, I am a woman, not a tank. I am learning to accept that».
Returning to work, the girl calls herself a deadline person; she dislikes time constraints so much that she tries to do everything at once. Otherwise, she feels depressed. She likes to work in silence, when there are no notifications in messengers and no one is making noise at home, i.e., in the evening. She classifies herself as “tea-dependent”; black tea with bergamot and the music of Imagine Dragons in the background help her cope with any mood.
«It just so happens that Imagine Dragons’ songs make me feel sad, happy, cry, and get angry. It’s my special music for the soul».
A year ago, Ivanna switched to a motorized wheelchair. She says she doesn’t know how she lived without it before. This is also a plus for independence and convenience, but sometimes she needs help with the wheelchair.
«There were times when I needed to get on a trolleybus. But it seems that there was no ramp, or it was so late that they decided not to open it. And the men tried to carry me. Without even asking, one took one side and the other took the other, and the chair tilted. I shouted, ‘Stop, please stop, put it back in place. I’ll explain how to do it now.»
I mean, it’s always very nice when people want to help, but when people do it without warning, such help backfires.»
She says that she accepts help calmly, but it is difficult for her to keep her balance, so if the chair is tilted too much, she can actually fall and injure herself. That’s why she asks people to ask first if she needs help.
«Sometimes I get stuck on a curb, and a man or woman comes up to me and asks, ‘Can I help you?’ And I reply, ‘Oh, yes, thank you, please, if you can, do this and that.’»
Ivanka’s life is indeed full of difficulties, some of which are caused by illness and bureaucracy. Nevertheless, there is much more positivity and genuine life. The girl jokes:
«It may sometimes sound very nice, like ‘successful success’ in the lines of journalistic materials. However, if you go a little deeper, everything is very complicated and difficult. Emotionally, morally, but that’s life. Because it is simple and easy, and for whom? Show me that person.»
The girl persistently helps not only herself but also those around her, especially people with disabilities. She advises GLUZD readers to live life to the fullest and not to create limits and barriers in their minds.
«Having the courage to show your true self is a very big challenge. And I am learning this because, at this stage, it is my path to freedom. I wish everyone to find their own, because we all deserve it.»
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 belong to their authors and cannot in any way be considered the official opinion of the financial partner and the European Disability Forum.
Journalist: Ulyana Fenyak