amily often knows us better than we realize. That certainly proved true with my husband, Vasyl. His sister and I used to work together in retail, and one day she said, “You should meet my brother. I know you’ll just click.” I laughed at the suggestion. I was divorced and raising a daughter at the time. I had married young, and after having Marina, my ex and I grew apart. He is still a wonderful father, but we weren’t meant to be together. Finding a soulmate was far from my mind, so my skepticism was understandable.
Still, perhaps I needed a change, so I agreed, saying, “Well, whatever. Then it’s a date.” And she was right—it did click. It never felt like Vasyl was new to me or Marina; it felt like he had always been part of our lives. After a year of dating, we naturally started living together. There was no dramatic announcement—it just happened. He was always there when I needed him, spending quality time with Marina, and one day he simply stopped going to his old place.
The same effortless rhythm carried over to our marriage. There was no grand proposal, just a quiet understanding that it was time for the next step. Four years after we began living together, we tied the knot in a small city hall ceremony during COVID, with just the people who truly mattered by our side. It wasn’t about extravagance; it was about love, family, and the life we were building together.
When we discovered I was pregnant, we were overjoyed. Marina couldn’t stop shouting that she wanted a sister, and our hearts swelled at the thought of welcoming a new member into our family. But the pregnancy was far from easy. The first three months were unbearable—morning sickness kept me glued to the bathroom. (To anyone going through this, I see you, and you’re stronger than you know!) At four months, I started feeling better, but the relief was short-lived. One day, I suddenly felt suffocated, as if the air was leaving my body. Vasyl rushed me to emergency services, where an x-ray revealed a spontaneous pneumothorax—an abnormal collection of air between my lungs and chest wall, which can be fatal if untreated.
I had no lung disease and never smoked, but surgery was immediate, and a chest tube had to be inserted. That day, I nearly lost my life. But perhaps pregnancy gives your body an extra will to fight—not just for yourself but for the little one inside you. I spent over a month in the hospital under observation, my mind constantly on Marina and the baby growing within me.
Dana was born on January 20th, 2021, via planned c-section. Pushing could have triggered another pneumothorax, which would have been life-threatening. I couldn’t hold her at birth due to strong anesthesia, and quarantine rules meant I was alone in the operating room. I imagined how lonely it must have felt for her in those first hours, away from my arms and the warmth of family. The next day, fully awake, I finally held her. That moment—seeing my child for the first time—is indescribable. In that instant, you know you would give everything for her, without hesitation.
Dana’s birth was exactly five years and five days after Vasyl and I started dating. I’ve always considered five my lucky number, and I believed she was destined to grow into a special, remarkable person. Our days at home were a mixture of joy and exhaustion. Marina immediately embraced her role as a loving, responsible older sister, helping with everything from daily care to preparations for Dana’s baptism—a day when friends and family could finally meet her.
At two months old, Dana’s pediatrician expressed concern over her muscle weakness and recommended a neurologist. Weeks later, the doctor mentioned a rare disease called Spinal Muscular Atrophy (SMA). I was in disbelief. Our pediatrician advised a second opinion, suggesting it might just be complications from pregnancy. After a month of massages and exercises, there was no improvement. Genetic testing eventually confirmed Dana had SMA Type 1, the most severe form of this rare genetic disease. Her muscles were deteriorating instead of developing, and eventually, the disease would affect her breathing.
The available treatments are limited and extremely expensive. One, Zolgensma, is a one-time gene therapy injection costing over $2 million. Living in Ukraine, we had no way to access it through the government or health insurance. For a moment, despair consumed me. Was I really going to lose my daughter? But the memory of holding her for the first time, of promising I would do anything for her, fueled a determination that nothing could break.
The support that followed was overwhelming. Family, friends, and volunteers came forward, organizing fundraisers, dedicating time, and spreading the word. Their kindness gave me strength to keep fighting. Dana is now 10 months old, and we have raised over $350,000—about 18% of the total. For a family from a country like ours, it’s a remarkable achievement, and it keeps our hope alive.
Caring for Dana is a round-the-clock responsibility. Her muscles are too weak to move her head for more than a few seconds, and she needs occasional ventilator support. Watching children her age explore the world while she can only observe is heart-wrenching. My goal is simple but profound: I want to give Dana a chance to live a long, full life and discover the world on her own terms.
Believe in your children and in yourself. You are their hero, even when the challenge feels impossible. I hope that one day Dana will know that we fought every battle to give her the life she deserves.
