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Every year, an average of 65,000 children are born in Norway. But the chances of getting 4H syndrome are one in a million.
– We didn’t think it could get worse when we were first told that one of your children would die because of you. But then we get the message that it applies to both, say Linda-Marie and Ståle Veie-Rosvoll.
For Verdal’s family in Trøndelag, the story began last fall. Parents Linda-Marie and Ståle were called in for a meeting with the kindergarten because their five-year-old son Isak was a bit behind on the engine.
– He had a little bad balance and a little poor eyesight, but otherwise he was a normal five-year-old boy who ran and was happy, the parents tell TV 2.
The shock message
They didn’t think there was anything wrong, but it was still decided that the five-year-old should have an MRI. The time was set for January, and a month later the first surprise message arrived:
The apparently completely healthy child had a leukodystrophy.
Leukodystrophy is a group of diseases that mainly affect the nervous system, especially myelin, the fatty insulating material of the brain.
Myelin surrounds and insulates nerve fibers in the central and peripheral nervous system and is a prerequisite for normal, efficient, and rapid signal transmission.
Stopped the doctors
But it would be several months before the parents received a final diagnosis. In May, Isak was found to have 4H syndrome.
The course of the disease depends on when it is diagnosed. But for now it’s impossible to say how long Isak and Seline are left.
Other symptoms include difficulty chewing and swallowing, instability, and impaired cognitive ability.
ON A JOURNEY: The family of four tries to lead a life as normal as possible, despite the circumstances. Photo: Private
4H syndrome is genetic and both parents must be carriers for the child to become ill. Because Linda-Marie and Ståle Veie-Rosvoll were both carriers, there was also a theoretical possibility that Seline, Isak’s four-year-old sister, also had the disease.
– When we got the answer about Isak, and they went through the symptoms, I had to stop them, says Ståle.
The parents immediately realized that Seline was also ill.
– The symptoms that were described were also adapted to Seline. Linda and I had no doubts, unfortunately, says Ståle.
In the cellar
The family of four went from having two completely healthy children to being told that both are likely to die.
When the parents found out about Isak’s diagnosis, they went to the basement. With Seline, they took the shock beforehand, before the diagnosis was confirmed.
UNCERTAIN: Isaac and Seline’s future is uncertain, and no one knows how much time they have left. Photo: Private
– It was a surreal feeling when we found out that Seline was also ill, but we managed to prepare her and ourselves for the answer.
Uncertainty
4H syndrome is a very rare disease. Therefore, there is little research and information.
Linda-Marie and Ståle therefore have no idea how much time they have left with their children.
– What keeps me awake is that we don’t know. And we don’t do it with the life we already have. Although the forecasts are not that good, we still don’t know, Linda-Marie says.
– Seline is nine years old, rides a two-wheeler and is very fit. Nothing indicates that she is ill, says Ståle.
Preparations
Despite the fact that neither Isak nor Seline notice anything special about the disease in everyday life, their parents have prepared them for what may come.
– We have explained that things can get a bit difficult. Isak begins to see that he has a bit of balance, but uses it more as an excuse. It has a very great value and there is nothing to stop it, parents say.
GOOD FRIENDS: When Isaac was diagnosed, Seline asked him if he could die. The two are good friends. Photo: Private
They are happy to see that the children are not affected by the disease.
Although parents do their best to keep their spirits up, they do not hide the fact that they are in an extremely demanding situation.
– If Isak does something that is good, he gets sad when you think about it, because it doesn’t have to be so long so that he doesn’t understand it, says Ståle.
– Allow regret
But Linda-Marie and Ståle have decided one thing.
– It is allowed to be sad, but we have to stay awake for the sake of the children. There are times when you need a few minutes to yourself, but we do our best to stand firm, says Linda and continues:
– I think I would have charged them much more, if we had been as low as at the beginning.
For the Veie-Rosvoll family, the joy of everyday life has taken on a completely different meaning after the children’s diagnosis.
– Life is unpredictable and you just have to make everyday life the best it can be. A goodnight hug is nice enough in itself, but now it means so much more. Everything has improved tremendously, says Linda-Marie.
Persistent trauma
Torun Vatne is a psychologist specializing in Frambu, a competence center for rare diseases. She says that being told that her son is going to die naturally is a huge shock in itself.
– It is a traumatic event that leaves very deep traces. This is not something that happens, and it becomes a persistent trauma where throughout the child’s life it is necessary to witness that little by little they lose skills, and that little by little they disappear before the eyes of the parents, says Vatne.
He speaks of several parents who have experienced little psychological support in the crisis situation that arises when they receive such a message, and he believes that the health service must be better in taking care of the parents.
– They should be able to live life to the best of their ability, create good times and be there for their children. So they need the support of the surrounding environment, says Vatne.
– Comfort in each other
Linda-Marie and Ståle say that they have been offered a lot of help. But right now it is difficult to accept help.
– In my case, I feel that what I want is to do it my way. It doesn’t feel natural to seek professional help, Ståle says.
Linda-Marie says she has tried talking to professionals, but it feels better to talk to people close to them first.
– We have also been together for so long, so we feel very comfortable and respect each other, says Ståle.
Support from friends and family has meant a lot, too, and it’s a big part of why the days go by.
– We didn’t tell many at first, but it got easier when we told it. You choose your perimeter when you are in such a situation, and we are very lucky with those we have.
Unlucky
Because the disease is genetic and both parents must be carriers, Linda-Marie and Ståle say they have been asked several questions about whether they felt guilty about the children getting sick. They don’t have that.
EXPERIENCES: Linda-Marie and Ståle are concerned with creating as many experiences as possible for their children. When it is allowed again, it is the turn of Africa and safaris. Photo: Private
There are other thoughts that have characterized the family.
– There is a 25 percent chance that the child will get it when they both have the gene. We have just been unlucky.
– But we think a lot about how unfair it is. There are many thoughts on why Isaac. Why Seline? And why us
This summer, a Spleis collection was created for the family. So far more than 230,000 have been received. The money will be used by the family to create memories together.
– We have decided to do everything, and we go to Africa to watch animals when it is allowed. We have always been spontaneous, but if we want to do something, then there is nothing to stop us, they say.
