Bjorn Savelkouls (6) from Loon op Zand has a leading role in a national campaign that can be seen from Monday. That sounds nice but there is a black edge on that leading role. With the campaign, attention is drawn for children with a metabolic disease. Bjorn has that condition. His parents Olaf (42) and Patricia (43) know that there is a 25 percent chance that Bjorn will not turn eighteen.
“Every hug, every smile, we enjoy it intensely,” says Patricia. “It may just end next week,” adds Olaf. They do not say this with any sense of drama. Bjorn has been in the hospital in a critical condition before.
Bjorn came to the world like a healthy baby. “But after the first day I already got an indefinable feeling,” says Patricia. “On day two he did not get his temperature under control. After that it went very quickly and he ended up in critical condition in Intensive Care.”
From that moment Bjorn live his parents in a intoxication. All they can do is absorb information, the emotions are out as much as possible. The diagnosis is made fairly quickly, a metabolic disease. That means that energy management and metabolism do not work properly. That doesn’t sound deadly immediately. Until the realization penetrates that without treatment this disease is almost always deadly. In fact, it is the most deadly disease among children in the Netherlands.
“But if a metabolic disease, also known as metabolic disease, is so deadly, why is so little known about it?”, Bjorn asked his parents after the diagnosis. That is precisely why the national campaign starts from Monday to put an end to this unfamiliarity. There are ‘Metakids’ in different videos, all children with a metabolic disease. Bjorn is one of these metakids.
They are cheerful videos with a gloomy undertone. “Every moment counts,” the campaign is called and so it is just for Bjorn. Every cold or flu can have serious consequences for Bjorn and even potentially. “A disease turns its metabolism upside down, which touches his organs again,” explains Patricia. “They are very close to a breakthrough for a treatment, but money has to come for that to also force that breakthrough.”
What is a metabolic disease?
There are more than 1,900 metabolic diseases. The syndromes vary widely, just like the life expectancy of young patients. Metabolic diseases are hereditary. It is the most deadly disease among children in the Netherlands. One in four children is not older than 18 years.
We all need energy. To dance, make music, exercise, study, in short: to live. Metabolism is the process that ensures that your energy management is in order: building blocks from the nutrients that we eat, such as carbohydrates, fats and proteins, are converted into energy.
Children with a metabolic disease are apparently healthy, but their energy management does not work well because of a ‘writing error’ in their DNA. The result: life -threatening energy shortages and serious damage in the body due to unprocessed waste.
Source: Metakids.nl
At the moment, Bjorn’s parents are buying time by slowing down Bjorn’s further demolition, there is no entirely back. They go to the hospital with him every two weeks for an infusion. He must regularly poke blood, gets tube feeding, has a strict protein diet and has to take medication. “The breakdown that the disease has already caused will no longer recover, but a medicine that stops the disease gives Bjorn a future again. That future in now jitzwart.”
“Bjorn does not really realize that it is strange that he has to go to the hospital so often,” says Patricia. “But of course we see the differences with other children. He is now at home because his new primary school, one for special primary education, is shed back for the care around his medicines and tube feeding. He has never played at friends at home. Almost no vacation passes that we do not end up in the hospital.”
Bjorn is a cheerful guy who chats nicely on it. This helps his parents enormously. “We enjoy extremely all ‘carefree’ moments such as playing a game, playing around and hugging. Nothing is obvious for us,” says Olaf.
View one of the campaign films with Bjorn in the lead role here:
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