Iwan’s Fight for a Future: A Family’s Unyielding Hope in the Face of SMA

When Iwan was born, his parents, Justyna and Marcin, were overwhelmed with joy. He was their miracle — a bright-eyed baby with a soft cry and a strong grip. But within weeks, that joy was shadowed by a growing fear. Iwan wasn’t moving like other babies. His limbs were floppy, his cries weak. Something wasn’t right.

After a series of tests, the diagnosis came: Spinal Muscular Atrophy (SMA) Type 1 — a rare genetic disorder that affects the motor neurons in the spinal cord, leading to muscle wasting and, if untreated, often death before the age of two.

The news shattered their world.

“We were told to take him home and make memories,” Justyna recalled. “But how do you accept that? How do you say goodbye before you’ve even said hello?”

But the family refused to give up.

They learned about a groundbreaking gene therapy called Zolgensma — a one-time treatment that could potentially halt the progression of SMA. The catch? The treatment came with a staggering price tag: over $2 million. And time was running out. The therapy is most effective when administered before the age of two.

With fierce determination, Iwan’s parents launched a fundraising campaign. They shared his story online, posted daily updates, and reached out to anyone who would listen. Friends, neighbors, and strangers rallied around them. Bake sales, charity runs, auctions — every effort brought them closer to their goal.

“Iwan became a symbol of hope,” Marcin said. “People saw his smile and wanted to help. They believed in him — just like we did.”

Meanwhile, Iwan continued to fight. He endured hospital stays, breathing support, and feeding tubes. But he also laughed. He responded to music. He lit up when his parents entered the room. His spirit was unbreakable.

After months of tireless effort, the impossible became reality. The family raised enough funds for the treatment. Iwan received the infusion just before his second birthday.

The change wasn’t instant, but it was real.

“He started moving his arms more,” Justyna said. “He could hold his head up longer. He even tried to sit with support. Every little milestone felt like a miracle.”

Today, Iwan is still on his journey. He continues physical therapy and requires ongoing care. But he’s alive. He’s growing. And he’s surrounded by love.

His story is more than a medical triumph. It’s a testament to the power of community, the strength of a family’s love, and the resilience of a child who refused to give up.

“We don’t know what the future holds,” Marcin said. “But we know Iwan has one. And that’s everything.”