Together, they have watched the same cartoons made for 5-year-olds in their wheelchairs for twenty years. They have the mental level of a 5 year old even though they are in their twenties.
At my doctor visits, I see their bizarre muscle spasms and loss of consciousness. These seizures require 24-hour supervision, the care these children receive from their very loving parents. It is also difficult to eat, so a stick tube is necessary.
Before they were born, I was already a family doctor. Their 6-year-old sister subsequently died after spending many months in the intensive care unit of a university hospital with a misunderstood neurological picture. As a general practitioner, I remember the heartbreaking scene surrounding the farewell and the funeral.
Unfortunately, prenatal testing was not available at the time.
It was only later that the children were found to suffer from a mitochondrial metabolic disorder called Leigh’s disease. Each body cell relies on its own power plant. Because of emotions, but especially because of too low temperatures, the power plant in each body cell no longer works in these children. Resistance to cold is gone with this condition. At the brainstem level, it means death.
This was clearly explained from the academic center. In schools for children with multiple disabilities, the children only fell behind. When staying at a constant warm temperature during holidays in Spain it really went better. The clinical picture is milder in a warm Mediterranean location. This is consistent with all internationally reported results. And is also confirmed by a leading Dutch top researcher and pediatric neurologist who has been researching mitochondrial metabolic diseases for years.
As a street doctor, I know that the government itself is partly responsible for the homeless becoming uninsured. If a municipality discovers that someone no longer lives somewhere, they are removed from health insurance. Many blogs and a thesis written by me out of anger also show that the system still works so that people without addresses lose their health insurance.
These loving parents received an unannounced visit from SVB at the address of their second home in Spain. They had no legal assistance – which is necessary according to their own SVB scheme – at the time of the interview. SVB had settlements for the energy bill, water bill and payment card behaviour. They claimed that those involved have not lived in the Netherlands for a number of years. In the end, SVB stated that the children do not have an address in Rotterdam, although the family has had the same home there for years.
Without SVB’s recognition of the address in Rotterdam, the right to Wajong, PGB and health insurance expires. PGB is paid by the health office that has carried out annual PGB checks and was aware of the medical reasons for the stay in Spain through declarations.
Ten years ago, as GPs, we had to incur high legal costs in our practice because a medical assistant had to repay 30,000 euros in allegedly improperly paid childcare benefits. Only ten years later it turned out that we had not been the only losers, and justice was done. I am not going to wait another ten years for justice for these children. They won’t survive that. I hope a government can learn from its own distrust of the child benefit case.
How long do we have to see that not only municipalities, but also other (semi)governmental institutions help to cause an uninsured epidemic? That even disabled people can be fooled with the brains of 5 year olds?
Fortunately, the municipality of Rotterdam cares about this vulnerable family.
All Dutch people are affected by the current energy crisis. These children are retarded and have an energy crisis in every cell of their body – all their lives – and are in danger of dying because of SVB’s policy. Top researchers in the field of mitochondrial metabolic diseases support a stay in a warm place. Can we really not make an exception for these children?
These loving parents do what is right for their children’s health. They fight to make sure these children don’t end up in intensive care or die. These children need health insurance. I don’t know of any nutrition providers who want to provide that nutrition without health insurance. These parents do what doctors (super)specialists, researchers and I find meaningful care, which is to take care of the children in a place that is favorable to them instead of in the colder Netherlands. I can think of no other meaningful care.
Social Insurance Bank, what must we do to prevent your organization from being seen as another contributor to the absurd uninsured epidemic?
Also read the analysis that Medisch Contact did regarding the care of the uninsured, incorporated into this triptych: Part 1 ‘The fear of abuse of the law is greater than the will to help’