This isn’t a story about miracles arriving on time; it’s about a mother, a father, and a village doing the impossible for one small girl, until hope turns into tomorrow. Her husband’s sister saw it first. “You should meet my brother, you’ll click,” she said. Irina laughed it off. She was divorced, raising her daughter Marina, and not looking for a soulmate. But she tried the date anyway. And she was right, they clicked. With Vasyl, it never felt new or awkward. It felt like home, like he’d always been part of their little family. After a year, he was simply there more than he wasn’t. Moving in happened like their marriage did; there were no grand gestures, just a quiet certainty. Four years later, during COVID, they married at the city hall with the people who mattered.
They wanted a baby together, and when the test finally showed two lines, they were over the moon. Marina campaigned hard for a sister. Early pregnancy was brutal, months of constant sickness, but things eased up around the fourth month. Then, out of nowhere, Irina couldn’t breathe. At the ER, an X-ray showed a spontaneous pneumothorax, with air trapped between the lung and chest wall. She needed urgent surgery and a chest tube. She nearly died. She stayed in the hospital for over a month, determined to keep her baby safe.
Because pushing could trigger another collapse, Dana was born by planned C-section on January 20, 2021. Under heavy anesthesia and without a birth partner allowed (Ukraine’s rules then), Irina didn’t hold her immediately. Dana spent her first hours in the NICU. The next day, when Irina finally met her wide-eyed daughter, everything narrowed to one truth: she would do anything for this child. Life settled into newborn rhythms, exhausted, happy, and full of family rituals. The baptism was their first big celebration with loved ones finally meeting Dana. But at the two-month checkup, the pediatrician noticed Dana seemed weaker than she should be and referred them to a neurologist. The word “SMA” landed with a thud. They hoped it was nothing, but another doctor suggested massages and time. A month of therapy changed nothing.
On April 4, 2021, they were sent for genetic testing. On June 22, they got the answer: Spinal Muscular Atrophy, Type 1, the most severe. Irina felt like she was stepping off a cliff into the unknown. SMA means the muscles stop developing and slowly fail, eventually affecting the breathing muscles. She learned there are only three approved treatments worldwide: two lifelong drugs that cost hundreds of thousands per year, and one single-dose gene therapy, Zolgensma, that can replace the missing gene and halt progression, the price: about $2.05 million.
In Ukraine, that medicine isn’t covered. There’s no health insurance to bridge the gap, and charities often can’t take on sums that large. Statistics were cruel: many children with SMA Type 1 don’t live past two. For a moment, hope slipped away. Then she remembered that first promise to Dana, “anything”, and decided to try the impossible.
Word spread. Family, friends, strangers, people she’d never met, stepped forward. Volunteers organized fairs, gave up weekends, and rallied online. Donations began to add up. Dana’s community had raised roughly 18% by ten months old, a staggering amount for an ordinary family in a struggling economy. It wasn’t enough yet, but it proved they weren’t alone. Day to day, SMA is relentless. Caring for Dana is a 24/7 job. She can’t move on her own or hold her head for long.
Sometimes she needs help from a ventilator. Outside at the playground, kids her age pull up to stand while Dana watches from her stroller. It breaks Irina’s heart, but it also sharpens her focus: she wants to give her daughter the chance to explore, choose her own life, and live. If she could tell new parents one thing, it would be this: the moment something seems off, test. Early answers matter.
She would also say that courage grows in community. Volunteers keep her going, giving her the strength to ask again and again for what Dana needs. They’ve launched fundraisers and kept everyone updated with photos and progress, turning a frightening diagnosis into a shared mission. Irina still believes in lucky fives; Dana was born five years and five days after that first date with Vasyl. But more than luck, she believes in showing up: for your child, your partner, and yourself. She hopes Dana will grow up knowing her mother did everything possible to give her a long life.
