From the very beginning of life, Jannis has been living with profound health challenges. Yet, with resilience, loving support, and the help of his movement trainer, Innowalk, he’s making small steps forward every day — regaining a bit of his quality-of-life day by day His mother, Sandra, kindly shared their journey with us.
In this article you can learn more about:
- A difficult start to life
- Life with limitations – and a twin brother
- The Innowalk brings movement into life
- Training with structure – and never alone
- Therapy with a plan – a well-coordinated team
- Looking ahead – with confidence
A difficult start to life
"On Jannis' second day of life, it was already clear that everything was at stake. It was about my child's survival."
Sandra Erdmann vividly remembers that day in January 2019. She had expected nothing more than a small, easily treatable hole in her twin sons' hearts – a condition well understood in medicine. But everything turned out differently. Jannis was diagnosed with total anomalous pulmonary venous return — a rare heart defect where all four pulmonary veins connect to the right atrium instead of the left. This meant his left heart chamber wasn’t receiving oxygen-rich blood. Immediate surgery was the only option.
As a medical assistant in a cardiology practice, Sandra knew a lot in theory. But nothing prepared her for the reality her family was about to face.
The first days after surgery were filled with hope, fear, and setbacks. Twice, Jannis needed ECMO — a heart-lung machine that oxygenates the blood outside the body — because his tiny body was at its limit.
“The ECMO was very hard on him, but it was necessary. He wouldn’t have survived otherwise.”
Jannis spent four months in intensive care at the University Medical Centre Hamburg-Eppendorf (UKE), followed by another month on the cardiology ward. A time that changed the family’s life forever.
Life with limitations – and a twin brother
Today, Jannis is six years old. He lives in Hamburg with his family, attends an inclusive daycare centre, and receives as much therapy and support as possible. His twin brother is healthy and developing as expected for his age. Jannis, however, faces significant challenges, especially with motor development:
He can’t turn or sit up on his own — only with assistance. And he can’t speak, at least not yet, his mother Sandra explains.
The family has chosen not to pursue an MRI scan to determine the extent of any potential intellectual disability. For them, the risks of anaesthesia outweigh the benefits, unless such a procedure becomes absolutely necessary. However, Sandra sees progress — small but important steps. Jannis watches the world with bright attentive eyes. He observes, reacts and remembers. Each little sign feels like a message: there may be more to his abilities than anyone can yet see. For Sandra, hope lives in these moments. The journey is not about rushing, but about moving forward, one small step at a time.
The Innowalk brings movement into life
A decisive turning point came in April 2025, when the Innowalk was introduced to Jannis's family. This movement trainer enables Jannis to move while standing, strengthening his muscles and improving his body awareness — all in a safe environment.
“The Innowalk has made an incredible difference,” Sandre says with a smile. “Jannis trunk stability has improved so much - he can sit hands-free, and he looks stronger overall. I'm sure he will continue to develop — there's more to come! Maybe one day he won't even need his soft orthosis.”
Following a successful trial, the family submitted an application to the health insurance company for the Innowalk-complete with all necessary t documentation. But to their disappointment, the application was initially rejected.
Sandra, Jannis' mum explains:
“We all had the feeling that the decision was made based on paperwork. Someone looked at the list over equipment that Jannis already had - therapy chairs, a wheelchair, and the gait trainer NF-Walker from Made for Movement and decided that he had all he needed. And then, very quickly, the file was closed. It was such a strange, sad feeling!"
But Sandra refused to give up. She wrote the objection herself, speaking not in medical jargon, but from her perspective as a mother, and explained that it was not about teaching Jannis to walk, but about his health, digestion and quality of life. That heartfelt perspective was what finally convinced them to approve the Innowalk.
Training with structure – and never alone
From the very first moment, Jannis embraced the training in the Innowalk. His mum says he was obviously happy to see his legs moving. He also started using the therapy table straight away.
“At first, he was exhausted after 15 minutes” Sandra recall. “He probably had sore muscles, too, and it was very strenuous for him.”
Already now, just after a few months of using the Innowalk, he exercises in it almost every day, sometimes for up to an hour at a time. This would be too much for many children. However, Jannis quickly got used to the training.
The Innowalk has become a natural part of family life, set up right in the middle of their living space. While exercising, Jannis often watches his favourite cartoons or plays with a ball. He’s never alone during training.
“He can't express himself verbally, but if he doesn't like something, he makes it clear,” Sandra says. “When that happens, we stop training immediately. But he usually shows clearly that he enjoys it."
The benefits aren’t just physical. His speech therapist has noticed changes too — small but thrilling. Recently, Jannis began saying his first words, softly and cautiously, as if testing new ground.
Therapy with a plan – a well-coordinated team
Alongside the Innowalk sessions at home, Jannis receives regular therapy: three physiotherapy sessions and one speech therapy session each week, sometimes at the daycare centre itself. The therapies complement each other: speech therapy focuses on the head, face and upper body, while physiotherapy focuses on the trunk and legs.
“We are a good team — including with the therapists. Everyone knows what matters,” Sandra says.
Jannis also uses other aids, such as a rehabilitation buggy, therapy chairs, orthoses and the gait trainer NF-Walker.
Looking ahead – with confidence
Sandra is motivated by more than just the hope of making motor progress. It’s about Jannis’ overall health - a strong heart, stable circulation, and especially better bowel function, which has greatly improved with daily movement.
“He used to have major digestive problems,” Sandra explains. “Now everything works naturally — because he moves every day.”
Despite all the challenges, Sandra Erdmann is optimistic about the future. She can see the progress and small successes, and she can feel how well her son is doing.
My wish for Jannis is that we can keep going on just like this — with patience, therapy and exercise. I hope that one day he will be able to express himself, maybe even speak, so that we truly know he’s feeling.
She firmly believes movement is the key — not just for the body, but for the soul.
“For Jannis, movement is much more than just muscle training. It is the path to participation, health — and perhaps even to language.”
Thank you, Sandra, for giving us an insight into your life! We are sure that Jannis will find his very own way!
