The Olivia case has stirred up Germany. The 13-year-old was in serious need of care and had to be fed. She’s better now. What has remained: the trauma of being left alone with this new type of illness. This is Olivia’s mother speaking.
FOCUS online: In mid-October, a documentary about Long-Covid ran on ARD. Right at the beginning you see your 13-year-old daughter Olivia, who is seriously ill. She dozes on a lounger on the terrace, can hardly move, speaks in a weak voice. The scene drew a lot of attention…
Yes, and that already in the summer, because from then on the film was already in the media library. Filmed in early May.
How is Olivia now?
There is good news. She’s feeling better. Much better. There are worlds between what is shown in the film and today. When I think of the tremendous reactions at the time, it seems like an eternity ago. In fact, things have gone uphill steeply since July.
That was unbelievable. A lot of people were so thankful that it was finally being shown how it really is. Actually always the same message: finally it is shown how it really is. That’s exactly the point: Long-Covid is still seen far too little. Of course, this also has to do with the fact that those affected have hardly any resources to communicate. Olivia, like many others, was extremely sensitive to noise. Even a soft murmur on the phone was an impertinence for her. One reason why we hardly communicated at first and also didn’t exchange ideas with other affected people.
Otherwise, I don’t really have anything to do with social networks. But out of necessity you end up on Facebook or WhatsApp. A WhatsApp group was huge, hundreds of people. Information was exchanged and data collected on a large scale. What helped whom? What dosage worked, which filters were used to clean the blood?
Here, what is actually the task of science was carried out on a private level. I was mostly a silent reader. Being affected as an adult is grasping at straws. But try something with a child that hasn’t been empirically proven? Never ever. I thought.
Did you contact the film team via the WhatsApp group?
Not directly. After some time, one participant created the group “unrecovered” on Instagram. We have to show ourselves, we need as much publicity as possible, that was the idea. To date, many sick people have presented themselves here with their names and faces. Olivia is one of those faces. Somehow, her photo got to the film crew. An editor then called us. Didn’t you have any reservations about showing your child like this?
Oh, of course, big concerns. If only because Olivia was so weak. It was clear: the shooting would be a big burden. But Olivia herself really wanted it, so we said we’d try, for an hour. My husband is a photographer and cameraman himself, he knows the power of images. Counteracting a terrifying phenomenon through Olivia’s presence has really filled us all.
With this illness, our child disappeared from the face of the earth. Nobody saw her anymore. And I don’t just mean the friends who couldn’t come because it would have been too exhausting. I mean, for example, the medical profession.
Tell me, what did you experience?
Numerous investigations that were made were unremarkable. The blood picture for example. I can put your mind at ease, we were told. Everything is good. But of course one is not at all reassured when one has brought one’s own child to the hospital in a wheelchair, where Olivia stayed for a week for diagnostics. Since her infection in early January of this year, her condition had deteriorated noticeably. When she got to the hospital, she could at least get from the wheelchair to the toilet if I supported her. Back home, just moving to a toilet chair was extremely difficult. I now know quite a number of young people who are diapered!
That sounds very desperate.
And so it was. We were told to accept the disease. Actually, we are otherwise quite good at taking life as it is. Olivia has an older brother who is severely disabled. We went through a lot there, epileptic seizures, even a tracheotomy. It was all terrible. But we have never been left so completely alone as with Long-Covid. How could we accept that our daughter had to suffer when no one had even tried to help her.
Wasn’t anything done therapeutically?
What if the illness itself is questioned? Psychosomatics came into play very quickly. For many doctors, this seems easier than asking themselves whether they might be doing the wrong tests. What Olivia had to endure. Even spinal fluid was removed. An expensive, not a little risky procedure. But to test Olivia’s blood for autoantibodies, we had to organize and pay for it ourselves, 250 euros.
Why did you want the investigation?
The fact that Long-Covid is an autoimmune disease and that it is about getting the autoantibodies out of the organism seems to be becoming more and more common in professional circles. After the Hirschhausen film, several scientists and doctors contacted us and they helped us a lot. They told me Olivia is in urgent need of immunoadsorption if she has autoantibodies in her blood. Unfortunately, no clinic was willing to treat Olivia. They only put us off or didn’t get back to us at all.
But what also happened after the film: we were literally torn apart in Corona denier circles.
I beg your pardon?
It was said that we had instrumentalized our child and let ourselves be paid for it. Others thought it was our own fault anyway because we had vaccinated our child. Olivia got sick right after the infection, not after the vaccination. Others claimed that we only pretended in the documentary that she was so bad anyway. The truth is, on the day of the shoot, she was relatively okay. Otherwise we wouldn’t have been able to film at all. On bad days, Olivia would curl up in bed and barely speak and need to be fed. Often with severe headaches and extreme heart palpitations.
But now it is imperative that you tell us what has happened in the meantime and how Olivia is doing today.
She did a so-called immune adsorption. The autoantibodies are filtered out of the blood in a complex process. Olivia was in a clinic and was treated for five days, each time lasting several hours.
There are different types of blood washing therapy. For example, Olivia underwent immunoadsorption, which filters autoantibodies out of the blood. TV doctor Eckart von Hirschhausen, on the other hand, underwent a different type of blood washing, a lipid apheresis, in the documentary mentioned here. Here the plasma is separated from the rest of the blood and in a second step the plasma is freed from harmful substances in special filters. Plasma and residual blood are returned to the patient. In long-Covid patients, it aims to filter out microclots, clotting factors, cholesterol, fibrinogen, cytokines, the Covid spike protein and autoantibodies.
However, showing the method was criticized by experts. Hirschhausen drew attention to an important topic, Long-Covid. However, doctors criticized the fact that he was undergoing a previously unproven treatment method against long-Covid. According to the experts, if they are used improperly, serious complications can occur. A recommendation should therefore only be made on the basis of well-founded scientific data.
So if you suffer from long-Covid yourself, you should seek individual advice from a doctor to what extent such a method could be useful to alleviate the symptoms.
How did this step come about?
Good question. The whole thing runs as a so-called individual healing attempt. Olivia was the first child the doctor treated. In the end it was coincidence and very lucky. My brother is friends with someone who owns a research company. This someone, in turn, met someone at the barbecue party… The whole thing went over several corners. When the doctor called, it happened very quickly. We can try that, he said. But he also said: there is no guarantee. In fact, I know a number of children with long-Covid who have done an immune adsorption. Of these children, Olivia is the one with the best outcome. Probably because she was ill for a comparatively short time. The virus was only in her body for a few months, other children have been dragging around with it for two years.
Did the therapy work immediately?
No, that took a while. The doctor explained to us that the autoantibodies settle on the receptors and that it takes a certain amount of time before they are down again. At first we noticed small things. Olivia was able to receive visitors again. First 20 minutes, then longer. Then she started tinkering, for most of the time her hands were too weak for that. But it was only a few weeks from sitting in a wheelchair to taking the first free steps. The body has to rebuild a lot of muscles. In the meantime she is actually almost the old one. She can go to school, meet friends and live an almost normal everyday life.
That almost sounds like a miracle cure.
I know we sometimes can’t quite believe it ourselves. But in the end it wasn’t a miracle, antibodies were removed. And as much as we enjoy this situation: of course we are on guard. There is no guarantee it will stay that way. The greatest fear is that of reinfection. And the infections are on the rise again. Of course we are very careful. But above all we enjoy! Olivia is a child of nature. Finally she can romp outside again, smell the grass. She missed all of that so much when she was ill. Even the singing of the birds in the garden was sometimes too loud for her.
She will probably have to nibble on this experience…?
you say so Let’s say the word calmly: Olivia is traumatized. Due to the illness, but also because we had to experience being left completely alone in an absolute emergency. We can all use therapeutic help right now. The waiting times for this are also a scandal. Luckily, Olivia is already getting lessons, but only because I started looking for psychological support nine months ago. I am sure every child seriously ill with Long-Covid needs such help. Not because Long-Covid is a psychosomatic illness. But because those affected experience something that makes them mentally ill.