GRETA’S STORY

ANIRIDIA JOURNEY: Finding and giving back Hope Through ERN-EYE and the Rare Disease Community

Our Story

Our journey with rare disease began when our daughter, Greta, was just two years old, when she was diagnosed with Aniridia—a rare, lifelong eye condition. In many countries, this condition can and should be detected at birth. For us, the diagnosis came late, and it changed our lives forever.

At first, we were shocked and overwhelmed. We had never heard of aniridia before. Suddenly, we were facing uncertainty, medical complexity, and fears about our daughter’s future. We spent countless nights searching for information, trying to understand what this diagnosis meant.

Slowly, we realized that we had only one choice: to use every resource we had—physical, financial, and emotional—to support Greta.

In Romania, we could not find any other families affected by aniridia. We felt isolated. Everything changed thanks to Dorica Dan, founder of the Romanian Rare Diseases Alliance, who connected us with an ERN-EYE expert and the honorific president of Aniridia Europe.

Through ERN-EYE and Aniridia Europe, we entered a world of knowledge and solidarity. We met European specialists and learned about medical management, long-term risks, and the importance of coordinated care. We understood the complexity of the disease and the full patient pathway.

This knowledge helped us become active partners in Greta’s care. It reduced fear and replaced it with confidence.

At the same time, we learned how to support our daughter emotionally. Greta grew up knowing her condition. She learned how to adapt, make choices, and accept limitations without losing confidence. This helped her build resilience, determination, and ambition.

Our NGO’s motto reflects this spirit: “Together we can oversee disability. I can, even if I can’t see.”

Over the years, Greta has undergone regular monitoring. We remained involved in the community and learned continuously.

Three years ago, we founded an NGO for aniridia in Romania to raise awareness and support families. Today, we help families nationally and internationally, sharing knowledge and encouragement.

Hope & Resilience

Today, Greta is in secondary school and achieves excellent academic results. She plays the piano, loves swimming, and is passionate about football and Formula 1. She is curious, determined, and full of life. Her diagnosis is part of her story, but it does not define who she is.

Without the support of ERN-EYE and the Aniridia Europe community, we would never have reached this stage. We would not have had access to the right information, specialists, and emotional support. We would not have known how to guide our daughter through her journey.

We would also like to share a message for healthcare professionals and decision-makers: it is essential to implement clear, standardized protocols for rare diseases such as aniridia and to raise awareness about their management.

Early diagnosis, coordinated care, and multidisciplinary follow-up can prevent severe complications and irreversible long-term effects. Proper guidance can change the entire trajectory of a child’s life.

ERN-EYE gave us more than medical connections—it gave us belonging, confidence, and hope. It taught us that rare disease does not mean rare support. It showed us that together, families, professionals, and patients can build brighter futures.

Our story is one of fear transformed into strength, and isolation transformed into community. And for that, we will always be grateful.