April 7, 2026, 2:01 am | Read time: 8 minutes
Children see the world differently from the way we do. They trust, they laugh, they need us—every moment. The feeling is all the more difficult when you realize something is wrong. That’s exactly how the story of Ulla and her son Emil begins: with a strange feeling that can’t be shaken off. At almost one and a half years old, it turned out that her child has Angelman syndrome.
In an interview with FITBOOK, Ursula Gerresheim, former professional soccer player and osteopath, reveals everything about the diagnosis and the impact of her son’s Angelman syndrome on her daily life.
“I had an early feeling that he seemed unusually absent”
FITBOOK: When did you first realize something was wrong?
Ursula: “Relatively quickly, after about two to three months. I noticed that he reacted differently than other babies, such as during baby gymnastics. You shouldn’t compare children, but I had an early feeling that he seemed unusually absent. I couldn’t quite grasp it at the time, but that feeling was there. Looking back, I can say: If Emil had been my second child, I would have recognized it much faster and more clearly. As a young mother, I was simply unsure, also because our pediatrician at the time dismissed my concerns.”
Doctor Observes Son: “Something is not right”
How did the diagnosis finally come about?
“The path was really long and emotionally challenging. There was a doctor at the baby gymnastics who observed Emil several times. The first time she was unsure, the second time she thought he might just be tired—and the third time it was clear to her: Something is not right. She approached me very cautiously. I remember feeling almost relieved at that moment because someone finally saw what I had been sensing all along. I told her directly that I also felt something was wrong with my child. Through her, we got to a specialized pediatric practice. Emil was thoroughly examined there, including with an EEG (electroencephalography, measurement of brain waves; editor’s note). In December 2005, we received a call: Our child is seriously ill. There was no exact diagnosis at that time. Emil was completely checked out at the Westend Clinic (editor’s note). There were several suspected diagnoses, none of which were confirmed. It was only months later, through a specific hand movement, that the suspicion of Angelman syndrome arose. In September 2006, the diagnosis was genetically confirmed. Emil was almost one and a half years old at that time.”
“This is not a normal developmental delay…”
What early warning signs did you observe in your son?
“Emil just didn’t develop as expected. He didn’t roll over, didn’t sit up, didn’t crawl. Eye contact was also minimal. What additionally confused me was his muscle tone. There were moments when he was very stiff—almost overextended—and then completely limp again. This back and forth was very noticeable. And the older he got, the clearer it became: This is not a normal developmental delay; there’s more behind it.”
Diagnosis of the Condition
How did your family experience the diagnosis?
“Of course, it’s a pivotal moment, but we already had a sense that something was wrong. That somewhat prepared us. When the diagnosis came, we looked at each other, hugged, and said: Now it’s about Emil. We see what he needs and make the best of it. We didn’t fall into a victim role. Of course, there were moments when tears flowed—and there still are today. But fundamentally, we quickly found a mode of action. Our environment supported us greatly.”
“Many people immediately say: ‘He is just so sweet.’”
How would you describe Emil today?
“Emil is an incredibly cheerful person. That is actually very typical for Angelman syndrome. He is positive, open, approachable—and has a very special aura. His attention span is very short; he quickly jumps from one stimulus to the next. But this cheerfulness, this smile—it’s always there. Many people immediately say: ‘He is just so sweet.’ And that actually describes him quite well.”
What gives you strength in everyday life?
“It’s hard to put into one word. ‘Pride’ doesn’t quite capture it—it’s more a deep love and admiration. Emil has been through an incredible amount health-wise: a severe sepsis, long hospital stays, repeated epileptic seizures. And yet he radiates so much joy for life. What gives me the most strength is the thought that he is happy. At least he shows it that way. And that makes me very happy in turn. Moreover, Emil has changed our lives significantly—also in a positive way. Without him, I wouldn’t be the person I am today.”
“Longest hospital stay was over 100 days”
What did your family routine look like?
“It often wasn’t a normal routine. Emil had an extremely disrupted sleep pattern. There were phases when I went to work with one or two hours of sleep per night—and that over a longer period. Then there were severe illness phases. At times, Emil was in a state for months where he hardly moved. Our longest hospital stay was over 100 consecutive days. You can only manage all this if you have support. Family, friends—without them, it wouldn’t have been possible. At the same time, it was always important to us that our daughter didn’t miss out. We consciously took turns and tried to do justice to both children.”
These Therapy Options Were Tried
Which therapies helped him?
“He had various therapies: speech therapy to strengthen oral motor skills, occupational therapy, physical therapy, and even equine therapy. The latter was very valuable for a time. Additionally, we used osteopathic treatments. You try a lot—always with the goal of helping him as best as possible. In adulthood, however, it becomes more difficult to find suitable offers.”
Bureaucratic Difficulties
How do you experience dealing with health insurance companies?
“There is support in principle, but as parents, you have to fight a lot for it. Many things have to be reapplied for repeatedly, often with objections. That takes an incredible amount of time and energy. And that’s actually time you need for your child or yourself. I wish this process would become significantly easier.”
Where do you see the greatest need for improvement?
“Clearly in the fact that parents are not constantly forced into these battles. Many aids are obviously necessary. Having to prove that over and over again is not sensible in my view. Above all, one must not forget: Not all parents have the strength or the means to endure such processes.”
“You don’t have to go this path alone”
What advice do you have for other affected parents?
“Seek help—absolutely. And from people who are in a similar situation. The exchange is incredibly valuable. There are associations, groups, networks—you don’t have to go this path alone.”
What role does the Angelman Association play for you?
“A big one. I came across it through a tip and quickly found a connection there—also through the Facebook group. People exchange ideas, support each other, and stay in touch. Even if you rarely see each other in person, a strong sense of community develops.”
The Angelman Association is a self-help group for parents of children with Angelman syndrome. Since its founding in 1993, it has supported families in understanding, accepting, and managing everyday life with their child. Sharing experiences, community, and empathy create an environment where those affected find answers and support.
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“A place in a residential home for adults is currently our biggest issue”
What do you wish for your son’s future?
“Quite concretely, I wish for him to find a good place in a suitable facility. That is currently a big issue. Beyond that, I simply wish for him to remain as he is: cheerful, open, content. And that he is seen in society as the person he is.”
Emil currently still lives in a facility for children and adolescents but will turn 21 on April 1. The transition to a residential home for adults is therefore imminent. After two to three years of waiting, there are now concrete prospects: Emil is already in trial living in a suitable facility.
What has helped you personally the most?
“My partner—clearly. We have grown even closer through all this. And our daughter has found her place without missing out. I can also only recommend accepting help. Psychological support can also be very valuable to put things into perspective and just to express everything once.”
“I want to give something back”
Why are you involved today?
“Because I want to give something back. I support the Angelman Association, raise awareness of the issue, and try to generate donations. This often happens on a small scale, but I believe every form of support counts.”
How has Emil changed your life?
“Very much. My professional and personal path is closely linked to him. Many decisions I wouldn’t have made without him. And for that, I am very grateful to him.”