On his 42nd birthday, Ingrid Döbberthien sat at her adult son’s sickbed and played him voice messages from his friends. Then the tears ran down his face. The mother will not soon forget this moment. Because Berliner Denny Döbberthien has been in a vegetative state since mid-October 2021 and nobody knows exactly how much he still notices from his outside world. Let alone whether he will ever regain consciousness.
“Our son was torn from the middle of life,” says Ingrid Döbberthien. Denny Döbberthien lived in Friedrichshain until he fell ill, worked as a self-employed banker and advised companies on tax matters. He had a large circle of friends and was very popular everywhere, she emphasizes.
But in October last year, from one day to the next, he was no longer able to articulate himself properly. “He called us late in the evening and seemed very confused and he constantly contradicted himself in his statements,” the 61-year-old recalls the phone call. He told the parents in fragments that he had just spent ten hours in the emergency room because his brain was malfunctioning. Since he got hungry from the long wait, he went home following the examination.
“Unfortunately, we didn’t react properly at that moment and thought that Denny should sleep in first and that things will look completely different the next morning,” explains Ingrid Döbberthien, her voice choking on tears. To this day she blames herself for not being able to assess how bad things were for her son.
The next morning, the parents received a call from a roommate that their son had been taken to a Berlin clinic by ambulance. He’d tried turning on the TV with his wallet instead of the remote control. His condition then deteriorated so much that the doctors had to put him in an artificial coma in order to be able to examine him at all. When they wanted to bring him back from long-term anesthesia weeks later, he fell into a coma.
After an MRI, the doctors diagnosed her son with progressive multifocal leukoencephalopathy (PML), a disease of the central nervous system. Patients like Denny Döbberthien suddenly have trouble speaking and thinking, appear clumsy and weak. PML is caused by a viral infection that may have started in childhood. People who suffer from a weak immune system are particularly prone to developing it. Many of those affected have a severe course of the disease and die within the first nine months. However, for a few, drugs that suppress the immune system also work successfully and they gradually recover following weaning them off.
Gerd Engelsmann
Denny Döbberthien liked to go to the games of his favorite club, Union.
“No one can make a reliable prognosis and tell us whether our son will ever make it back to life,” says Ingrid Döbberthien quietly. He is currently being housed in a nursing home in Brandenburg, 20 kilometers from where his parents live. There he is artificially fed and monitored and cared for around the clock. The parents drive to their child several times a week.
Just yesterday, Ingrid Döbberthien played the anthem of 1. FC Union Berlin to her son at his bedside. Before his illness he was a big fan of the football club. “We don’t know what he’s going to hear,” she says. In her hope, the mother clings to every blade of grass.
With her husband Frank-Peter, Ingrid Döbberthien now has an appeal for donations on the online portal gofundme.com started. The couple hopes to raise €24,000. For a special therapy including transport and an accompanying person to Berlin, which is not covered by health insurance. “A retired medical professor from a Berlin hospital really recommended this treatment to us,” explains Ingrid Döbberthien. Transcranial pulse stimulation is typically used in Alzheimer’s patients. The aim is to influence the productivity of nerve cells in selected brain regions using a device with targeted ultrasound waves.
hope for therapy
The Döbberthiens believe that this therapy might positively influence the course of their child’s illness. When asked by the Berliner Zeitung in a neurological department of a Berlin clinic whether they were aware of this procedure, they did not want to comment publicly. The German Alzheimer Society is already distancing itself from the expensive procedure, since the effect is not entirely clear and it raises hopes of a cure for those affected and their relatives, which may not be fulfilled. “The study, widely cited as evidence of efficacy, looked at 35 patients with dementia who were likely to have Alzheimer’s disease (a very small group). There is no comparison group that received an externally indistinguishable but ineffective treatment (placebo). On this basis, no statement can be made regarding the effect of a therapy,” says the German Alzheimer Society. And further: For this purpose, a methodologically careful study on a larger sample and in comparison to a control group is necessary. In addition, the study will be financed by the company that sells the corresponding devices.
But the couple does not want to lose their hope for a cure. Despite the many setbacks that the family had to endure. In April, her son’s landlord gave notice of termination of his apartment in the Samariter-Kiez in Friedrichshain following 22 years. Legally, this is not contestable, since Denny Döbberthien was already two months’ rent in arrears due to his lack of income.
The parents have to cope with a high financial burden due to the illness of their son. They had to give up the apartment, buy furniture for his room in the home and also pay for medical supplies. They also drive between 500 and 600 kilometers a month to the nursing home. “We don’t yet know how much of the money we’ll get back from the social welfare office,” says Ingrid Döbberthien.
She is exhausted. The uncertainty and fear for her son rob her and her husband of their strength. They are both retired and have imagined their old age differently. But you must be strong now. Not only for her adult child, but also for her three grandchildren and her daughter, who need her as well. “It’s no use if we’re going to give up now,” says Ingrid Döbberthien. She hopes so much for a miracle.
