How GAND Foundation was born from love, determination, and the belief that every child deserves a future.
OUR STORY
Lora’s journey
At first, nothing suggested that her path would be different. Over time, however, we began to notice subtle developmental delays. Small things at first. Almost unnoticeable. But with each passing month, the signs became clearer.
What followed were medical appointments, unanswered questions, long waiting periods, and growing uncertainty. We knew something was wrong, even when clear answers were missing.
Lora was born as a healthy, seemingly typical child. Her first days, first smiles, and first moments were filled with the same hope every parent knows the belief in a bright and open future.
The
moment
everything
changed
Less than a month before Lora’s second birthday, we finally received a name for what had been haunting us for so long:
GAND syndrome
An extremely rare genetic disorder, with no available treatment and no clear path forward.
The diagnosis brought shock.
The kind of moment when the world stops.
When expectations collapse into fear and uncertainty.
But alongside the shock came a decision.
No matter the diagnosis, Lora is our daughter.
And for her, we would do everything!
When parents hear words no one should ever have to hear.
When parents hear words no one should ever have to hear.
We began searching for answers everywhere, in Slovenia, across Europe, and around the world. We read scientific papers, connected with researchers, doctors, and other parents. Every piece of information became valuable.
Every possibility, a spark of hope.
From love to action
Lora herself became our greatest teacher. She is a brave, gentle, and joyful child. Her smiles are not taken for granted — they are victories. Her determination is quiet but powerful. Each day reminds us that a diagnosis does not define a child.
This foundation was not born from ambition. It was born from love.
From the refusal to accept that there is “nothing we can do.”
From the belief that together, we can create a future that does not yet exist.
This is Lora’s story.
And it is also a story of hope.