Trouble Comes When You Least Expect It

By Marina, mother of Alice – Russia

Trouble comes when you don’t expect it at all. It has no gender, no age, no place on the map.

My name is Marina. I am the mother of Alice—my long-awaited, beloved daughter. From the moment she was born, she filled our lives with joy. But when she turned one and still hadn’t taken her first steps, I knew something was wrong.

Alice eventually began to walk, but she stumbled often and lost her balance. By age six, doctors diagnosed her with cerebral palsy. But then her right hand began to twist backwards—and that was when we realized something deeper was happening. A rare and devastating diagnosis soon followed: PKAN.

It was like a bolt from the blue.

In all of Russia, only a few children live with PKAN. Despite the fear and pain we face, Alice and I hold on to hope. And that hope is fueled by the compassion and courage of others—people we may never meet, but who fight alongside us every day.

From the bottom of my heart, I want to thank the team of scientists led by Professor Susan Hayflick for their fearless and tireless work. I am also deeply grateful to Sherine Blackford and the global community of PKAN parents who come together on Facebook to share strength, knowledge, and support.

We believe—we know—that good must triumph over this disease.
Hope lives on.