Senna contracted the serious sleeping sickness narcolepsy after being vaccinated against swine flu. Now, 14 years later, he is financially compensated by the government. Mother Jenny: “It’s not an acknowledgment, but we can close it.”
“I cried hard when I received the message that we are being included in the settlement,” says Jenny, mother of 16-year-old Senna. “The discharge was so big.”
‘The Victim of Vaccination’
Senna belongs to the small group of narcolepsy patients who receive financial compensation from the cabinet. Last Wednesday, State Secretary Maarten van Ooijen informed the House of Representatives that a payment will be made. He does not want to say exactly how many children are involved and what amounts, for reasons of privacy. “I can’t mention the amount either,” says Jenny. “We don’t like the money either, but we do like the idea that Senna can support herself in the future.”
In his letter to parliament, Van Ooijen writes that it is not clear whether the children in question have developed narcolepsy through the vaccination or whether there is another cause for their illness. Scientists are still undecided. Jenny finds it indigestible, because it has long been crystal clear to her. “We are the victims of a vaccination, I am sorry that they do not recognize that.”
Global flu
In 2009, a new flu virus spread around the world, the H1N1 virus, also known as swine flu. This flu was serious and could be deadly. In a short period of time, approximately 5 million people in the Netherlands were vaccinated against swine flu. Among them were more than 600,000 children from six months to four years old who received the vaccine Pandemrix. So was Senna, who was three years old at the time.
A few months after the vaccination, Senna kept falling asleep and his muscles relaxed. During a holiday in a playground, his legs collapsed. After many examinations, his parents were diagnosed: it turned out to be narcolepsy, a serious sleeping sickness that will never go away. The disease completely changed the life of the family. For example, Senna never slept through the night, he had to take heavy medication and he was often unmanageable.
Pleasure
Jenny was soon convinced that the vaccination and the sleeping sickness were linked. “In December 2009 my child got an injection, three months later I had a completely different child“, she says.
And so she wanted redress, especially when she saw that affected families in countries such as Sweden and Finland were compensated. She went to a lawyer together with other parents.
‘5 million was not enough’
Personal injury lawyer John Beer took on the case and held the government liable for the origin of narcolepsy. In the end, a settlement was reached. “I’m glad we were able to settle, that it worked out,” he says with relief. “We have now completed nine cases, two other cases are still ongoing.” A budget from the Ministry of Health, Welfare and Sport previously showed that 5 million euros had been reserved for the group of parents. “5 million was not enough,” said Beer.
Not liable
Beer can imagine that parents find it a pity that the government does not recognize liability. “If we had said: we do not want to settle, but admit liability, it would have taken much longer.”
And it is really special that the government is now stepping in, he emphasizes. “As far as I know, this has never happened before. It is very special. The state has repeatedly stated that this is done out of solidarity with these seriously affected children. Because the images are dramatic. It has impressed me to see how bad this has intervened in a human life. That seriousness is the reason to do this.”
Generous
André Knottnerus was chairman of the Health Council in 2009 and came up with the advice to vaccinate high-risk groups and small children against swine flu.
“It is terrible what happened to those parents and children. I think it is very wise that the government compensates these children and as far as I am concerned it should be generous.”
‘It could have been faster’
Knottnerus emphasizes that there is still uncertainty about the causal link between the vaccination and the disease. Rare side effects can always occur. “It’s not like you can say: we can prevent this in the future. At the time there was a significant increase in the number of hospitalizations of young children. There was a registered vaccine that was approved by the EMA and then we advice to proceed with offering vaccination. At such a moment you always have to decide with a certain amount of uncertainty.”
He has been away from the Health Council for more than ten years. “I think this took a very long time. The vaccination was in 2009 and compensation is only now coming. That could have been a bit faster. Of course you can’t solve it one hundred percent, but do you have to wait as long as the government?”
Secretary of State on the floor
Senna is now 16 years old. State Secretary Van Ooijen personally visited them, says mother Jenny. “He came to see us and wanted to know how narcolepsy affects our lives.”
Senna still takes heavy medication every day. He is taking his final exams at the VMBO and the plan is to do an ICT course. “There, too, of course, his narcolepsy must be taken into account,” says Jenny. The new school seems willing to set up a room especially for Senna where he can sleep.
Battle is over
The fact that the legal battle is now over gives Jenny peace. Although it remains stuck that no liability is acknowledged.
“Sure, there is suitable, but it is not recognition. That is a pity. But it is very important for Senna’s future that he receives compensation. Now we can close it.”
In 2014 we spoke to mother Jenny and the then 8-year-old Senna. See the report from that time here:
2023-04-22 09:39:32
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