The Old Bridge in Heidelberg became the metaphoric turning point where a mother transformed from engineer to patient advocate, building a supportive network for families affected by rare neurotransmitter diseases.
Ivana Badnjarevic is an engineer by training and a patient advocate by calling. She lives in Novi Sad, Serbia. Her daughter’s journey with a rare neurotransmitter disorder transformed her life, inspiring her to found Lil’ Brave One (Hrabrisa), a patient organization supporting families navigating rare neurotransmitter diseases. Through advocacy, connection, and persistence, Ivana builds bridges of hope—turning fear and uncertainty into knowledge, support, and possibility for others.
Transcript
There is a large three-piece painting hanging in my living room. It shows the Old Bridge in Heidelberg, the bridge made of stones, gracefully stretching across the Neckar River. The image dominates the wall, taking up more than a third of it. In the image, the bridge glows in the evening, the golden light shimmering and reflecting in the green waters of the river. To most people, it's just a pretty bridge.
See, I'm an engineer by training, a problem solver, a planner. I used to think I could fix anything with logic, hard work and research, but nothing prepares you for having a child with a rare disease.
My daughter was born in 2013. And from the very beginning, we knew something wasn't right. She couldn't hold her head, she couldn't sit, she couldn't move the way babies do. For 14 long months, we were stuck in a diagnostic odyssey, test after test, hospital after hospital, specialist after specialist. No answers. We were watching her slipping away, and I couldn't fix it.
Eventually, we heard about expert center in Germany, in Heidelberg. They're a team of experts that might know what was wrong.
Traveling there was no small thing. Coming from Serbia, it meant different language, commitment, money, effort. Not every family could do it, but we packed our luggage together with our fear and hope and traveled there, the three of us, my husband, our baby girl and me.
I remember that first day in Heidelberg City Center in August 2014 so clearly. After days in hospital, testing, waiting, hoping for news, we stepped out for a weekend to breathe. My husband suggested to go down to the city center and to the river. And there it was, the Old Bridge, massive, built of red stones, its art is reflected in the river, surrounded by the hills. Beautiful.
It was a warm day, sunny day. The air was warm and you could see people enjoying in the summer. The students and tourists were crossing the bridge, enjoying life, laughing, taking photos.
My husband suggested, “Let's walk it,” but I couldn't. Our daughter was in her baby stroller, motionless, fragile. And all I could think was, “She should be walking. She should be crossing that bridge on her own little feet, and she couldn’t, so I couldn’t walk either.”
We stood still, looking at the bridge but not crossing it.
Later, we came back to our room to wait for a call from the hospital. That same day, our daughter received the diagnosis, tyrosine hydroxylase deficiency, a rare metabolic neurotransmitter disorder caused by a lack of an enzyme, which is needed to produce dopamine. Without it, the neurotransmitters in the brain cannot function properly.
Children with tyrosine hydroxylase deficiency may have severe movement disorder, different delay neurological impairment, and my daughter had all the symptoms. The doctors told us something more. There was a treatment. It was possible to help her.
We went back home to Serbia with prescription, tablets, a plan and hope. And over the next few months, our daughter began to change, slowly at first. A tiny movement, a sound, a smile. And soon enough, she began to sit. She was waking up.
Six months later, we went to Heidelberg for follow up. The treatment was working, the doctors were pleased. So, after the appointment, we walked to the city center for an ice cream. And without really planning to, we ended up back at the bridge. Same spot. Same view.
My husband said again, “Let's walk it.” And this time we did.
I'll never forget the feeling of our feet hitting the stones, the river glittering below, the cool air. Our daughter, sitting up in her stroller now, smiling, playing with toys.
I walked that bridge with tears in my eyes, thinking about everything it had taken to get there, the knowledge, the persistence, the research, the communication with the experts, the courage. And somewhere between one end of the bridge and the other, I felt something shift in me. The engineer in me wasn't gone. She was being rebuilt.
That was the moment when the idea to start a patient organization first appeared. I didn't want any other family to go through a similar thing alone. I wanted to build something, not a bridge made of stones, but the organization made of connection, information, and support.
So, in 2016, we found Lil’ Brave One, a patient organization for rare neurotransmitter diseases. At first, it was hard. I wondered if we were making a difference. I wondered, maybe I should go back to just engineering.
Then came 2019. We organized a conference in Serbia, our biggest yet, bringing local clinicians with international experts. I was terrified, thinking, “Would anyone come? Would it matter?”
And then something extraordinary happened. An 11‑year‑old boy, Mikhail, was present at the conference. He had spent 11 years in a wheelchair undiagnosed. His family was desperate. That day, thanks to the expert consultations, he was finally diagnosed with a rare neurotransmitter disease and he could begin the treatment.
Some months later, I was in Heidelberg again. This time, our daughter wasn't just walking. She was running, laughing, holding our hands. I texted Mikhail’s mother, and she sent me the video. Mikhail was sitting on his own. I can still see it in my mind. Mikhail pulling up in a sitting position, his body shaking, the movement not smooth, but he did it. He sat up on his own. He had never done that before during 11 years of his life.
I got many photos and videos of Mikhail after. I witnessed his first steps and his graduation ceremony, but that video is burned into my heart. That is the moment that I understood that the organization we built mattered. It was truly a moment for me.
From diagnosis to advocacy, from parent to patient expert. And that is what I truly understood, the power of patient advocacy. When we speak up, when we connect, when we build, we don't just help one child. We make space for many.
So now, when someone comes to my home and notice the Heidelberg painting, they often ask, “Have you been there?” I smile and say, “Yes, many times.” But what I really want to say is, “That bridge built me.”