It took me far longer to write this story than I expected, because fighting for your child is overwhelming. You never truly know where to begin, how to navigate it all, or how it will end. But I had to start—I simply couldn’t not try. There was no choice.
Let me begin from the very start. My husband, Ruslan, and I were blessed with a little boy, Yehor. We are from Ukraine and live a simple life: I work as an accountant, and Ruslan is a policeman. With our jobs, the monthly income barely reaches $300. We were an ordinary family, but we were happy. We looked forward to having a child, playing together, and living what we thought would be a “normal” life. But the first years after Yehor was born were far from what we imagined.
From as early as four months old, we noticed a tremor in Yehor’s hands. Every doctor we visited told us not to worry, that he would “grow out of it.” But the tremors persisted. Eventually, we went to the most expensive private hospital in Ukraine, and there, a doctor raised the possibility of SMA—spinal muscular atrophy. I had never heard of it before. When the doctor explained the disease to me, fear consumed me. I didn’t know how I could cope, but I knew I had to stay strong for Yehor. He needed a mother who could face this challenge with hope, not despair. When I asked if there was a cure, the doctor said, “Yes, there is—but you will never be able to pay for it. You’d better plan on having another child.” Even now, I struggle to comprehend the cruelty in those words.
Spinal muscular atrophy is a genetic disorder where the genes responsible for muscle function are missing. There are several types: Type 0 children rarely survive past birth, Type 1 children often face severe movement and breathing issues and usually live only 2–3 years, and Type 2 children, like Yehor, live longer, but the severity of their symptoms varies greatly. Children with SMA Type 2 usually cannot walk, many cannot sit independently, and some face difficulty swallowing. Over time, SMA is progressive: mobility decreases, limbs can deform, and eventually, breathing becomes difficult. In Ukraine, without proper treatment or support, children with SMA Type 2 typically pass away in their early twenties, often after struggling with a lack of infrastructure for disabled people. Yehor’s diagnosis of Type 2 meant he had a chance—but it would be an uphill battle to ensure he could walk, thrive, and live longer than statistics predicted.
From the moment of his diagnosis, I met other incredible families living with SMA Type 2. They had learned to adapt and persevere, because just five years ago, no treatment existed. But now, a chance at recovery was within reach for my son. The doctor was right about one thing: we could not afford the treatment on our own. Yehor was eligible for Zolgensma, a revolutionary gene therapy. Unlike other SMA treatments that require lifelong dosing costing $700k in the first year and $300–400k annually afterward, Zolgensma is a one-time treatment that replaces the missing gene entirely. Knowing this was our best chance, we set out to raise $2.3 million. Every day, I look into my son’s eyes and cannot imagine saying, “This is too much. We won’t try.”
Our journey began with a single Instagram post. We were soon surrounded by strangers whose kindness transformed them into a support network, and eventually, family. People from Ukraine, Canada, the U.S., Germany, Belarus, and beyond joined our cause. Their generosity has been astonishing. Today, we have raised over $900k—a testament to the countless people who paused, read our story, and chose to help rather than scroll by.
Recently, we received life-changing news: San Antonio Children’s Hospital agreed to perform the treatment for $1.87 million—but only if Yehor receives it before turning two. With just two months remaining to raise the final $900k+, every contribution counts. If just 90,000 people saved $10 each, Yehor could receive a gift that countless generations of children with SMA can only dream of: a longer, healthier life.
Yehor works tirelessly every day on special rehabilitation exercises. He is a little warrior, and I owe it to him to do everything in my power to secure this treatment. One day, he may ask, “Why didn’t you get me the treatment?” and I will never be able to answer, “Because people scrolled by.” I truly believe in the kindness of people, especially after witnessing complete strangers work day and night to save my son.
I won’t lie—it is not easy. Supportive messages do not always come; declines and hurtful comments have become part of our journey, and each one stings like the first. But then, another parent reaches out, sharing their story of coping with a sick child, and the burden feels lighter. In these moments, I know Yehor will get the treatment he needs to survive—and thrive.
