Parenting children with Ehlers-Danlos syndromes — or EDS — is a sport on its own. From the moment my children were born, I knew something wasn’t right. They were symptomatic from birth, but for years, doctors couldn’t figure out what was going on. And even when we finally found answers, the hardest battles weren’t against the disease itself… they were against the system that was supposed to help us.

When my youngest was almost two, my legs suddenly stopped working. By accident, we met a doctor who recognized the signs of EDS. I was finally diagnosed. He referred me to a rehabilitation doctor who also connected the dots to my children’s symptoms. For the first time, everything seemed to make sense.

We were referred to a genetic specialist. She said, “We’re going to figure it out.” I smiled — because finally, someone was taking us seriously. But that moment of hope changed everything. She documented in my children’s medical file a warning to “watch out for mom.” Because I smiled, she assumed I liked my children being sick. Not long after, I was investigated for Munchausen by proxy. 

I went through five psychological evaluations. All of them concluded that the problem wasn’t in my mind. It was in the communication between the doctors and the family.

But while I was being investigated, my children didn’t receive proper medical or mental health care. We had to take them abroad to get help. And because in the Netherlands children are required to attend school, their frequent illness became another problem. No medical letters meant no support. No support meant we were treated like we were failing our children.

Nobody coordinated anything. Nobody listened. Nobody asked us what we saw, what we felt, or what we needed. We were fighting to care for two sick children, fighting for my own health, and fighting a system that should have been standing beside us — not against us.

Three years ago, after a very long wait, we finally got accepted by a youth mental health organization. They had never heard of EDS before. But they did something simple, something powerful: they listened. They learned. They collaborated with our rehabilitation doctor.

My children were eventually diagnosed on the autism spectrum and with attention deficit hyperactivity disorder, and avoidant/restrictive food intake disorder. We built a plan together. And today — for the first time — my children are in a regular school, learning and growing like other kids. It’s not easy. There are still challenges every day. But it shows what is possible when professionals work with families, not against them. 

And yet, the struggle isn’t over. Hospitals in our region still say that EDS and its comorbidities are “an opinion.” Not a real medical issue. So our children still don’t get proper medical care. In the meantime, my own health has worsened. The less I showed my illness, the less I was blamed. So I smiled. I did my hair. I wore make-up.

And because of that, my appearance was written in my children’s file as a sign that I must have mental problems.

Behind that make-up, I survived sepsis. I survived three comas. I survived cortisol crises from the stress of fighting a system that refuses to see us. Six days after my last coma, I was sitting in a meeting for my children. No one there even knew what had happened to me. Because I looked fine. Because I couldn’t afford not to.

This is the reality of many families living with EDS. We are fighting for recognition. For care. For understanding. Not because we want special treatment. But because our children deserve the same medical care and respect as any other child. I’m not here to blame anyone. I’m here to ask you — to invite you — to help change this.

We need doctors who recognize EDS as real. We need collaboration between hospitals, schools, and families. We need to stop labeling parents as suspicious just because they’re strong. And we need care that listens, learns, and adapts.

My children are thriving today not because the system worked — but because we refused to give up. No family should have to fight this hard to be believed. Thank you for listening to our story. And thank you for being willing to be part of the change.

Guest Post by Debbie Hellenbrand from the Netherlands. 

November 2025

Debbie’s family’s story is part of the film We Are Visible, which you can watch on Vimeo. 

More about wrongful child abuse allegations and the systemic issues behind it, you can find out in the film Complicated. We have reviewed it and interviewed the producer.