Four years ago, a treatment appeared that could have saved Ebbe (2). But the system that will uncover the deadly disease is still being assessed by the bureaucrats.
Published: 29/04/2024 20:04
The short version
- Ebbe (2) died of a rare disease called MLD. The treatment that could have saved him has not been put in place, even if it exists.
The summary is created with the help of artificial intelligence (AI) and quality assured by Aftenposten’s journalists.
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Anders Johansen remembers that they went straight from Ullevål hospital to the kindergarten. The road there went through Nordre Gravlund in Oslo.
The thought of his son ending up in such a place before he grew up was unbearable. It felt absurd to put one foot in front of the other, past the tombstones along the dirt road and up to the nursery school. Say hello to the staff and pick up Ebbe, apparently healthy and fine, but at the same time so seriously ill. The message they had received from the hospital was devastating.
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