Together they have been watching the same cartoons of 5-year-olds in their wheelchairs for twenty years. They have the mental level of children at the age of 5, even though they are in their twenties.
On my GP visits, I see strange muscle spasms and loss of consciousness. These seizures require 24 hour supervision, and the care these children receive from their very loving parents. Eating is also difficult, so a wedge probe is essential.
Before they were born I was a family doctor. Then their 6-year-old sister died, after spending several months in the intensive care unit of a university hospital with a misunderstood neurological picture. As a general practitioner, I remember the heartbreaking scene that surrounded the farewell and the funeral.
Unfortunately, there was no possibility of prenatal testing at that time.
It was only later that the children were found to suffer from a mitochondrial metabolic disease called Lee’s disease. Each cell of the body depends on its own power plant. Because of emotions, and especially because of extremely low temperatures, the power plant in every cell of the body is no longer functioning in these children. With this condition, cold resistance disappeared. At the level of the brainstem, this means death.
This was clearly explained from the Academic Center. In schools for children with multiple disabilities, only children were left behind. Staying at a constant warm temperature during the holidays in Spain it really worked out better. The clinical picture is milder in a warm place than the Mediterranean. This is consistent with all results reported internationally. It was also confirmed by a prominent Dutch researcher and pediatric neurologist who had been researching mitochondrial metabolic diseases for years.
As a street doctor, I know that the government itself is partly responsible for the homeless not getting insurance. If the municipality notices that someone no longer lives somewhere, they will be removed from the health insurance. Several blogs and the thesis I wrote out of anger also show that the system still works in such a way that people without an address lose their health insurance.
These loving parents received an unannounced visit from SVB at the address of their second home in Spain. They did not have any legal assistance – which is necessary according to their SVB scheme – at the time of the interview. SVB had adjustments for energy bill, water bill, and debit card behavior. They claimed that those involved had not lived in the Netherlands for a number of years. In the end, the SVB stated that the children did not have an address in Rotterdam, despite the family having had the same house there for years.
Without the SVB recognizing the address in Rotterdam, the right to Wajong, PGB and health insurance will lapse. The PGB is paid by the health care office that performed the annual PGB examinations and was aware of the medical reasons for stay in Spain through the data.
Ten years ago, as general practitioners, we had to incur exorbitant lawyer costs in our clinic because the physician assistant had to pay €30,000 in childcare benefits allegedly unfairly paid. Only ten years later it became clear that we were not the only losers and that justice had been served. I do not intend to wait another ten years for justice for these children. They don’t survive it. I hope the government learns from its mistrust of the child benefits issue.
How long will we see that not only municipalities but also other (semi) government institutions are involved in causing an uninsured epidemic? Can disabled people even be fooled with the brains of five-year-olds?
Fortunately, the municipality of Rotterdam takes care of this vulnerable family.
Every Dutchman is affected by the current energy crisis. These children are underdeveloped and have an energy crisis in every cell of the body – throughout their lives – and are at risk of dying due to SVB policy. Leading researchers in the field of mitochondrial metabolic diseases support a warm place. Can’t we really make an exception for these kids?
These loving parents are doing what is right for the health of their children. They are fighting 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 other stretch tube feeding suppliers who would like to provide that feeding without health insurance. These parents do what (excellent) medical professionals and researchers and I find meaningful care i.e. caring for the children in a place that is convenient for them rather than the cold Holland. I can’t think of any other meaningful care.
Social Security Bank, what should we do to prevent your organization from being considered another factor in the uninsured absurd epidemic?
Also read the analysis by Medisch Contact regarding the care of the uninsured, which is included in this trilogy: Part 1 ‘The fear of breaking the law is greater than the will to help’