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 crushing, writes Aftenposten.
This is how they found out about the disease
Ebbe always woke up in a good mood. He was a fool, say the parents. Cozy and warm, but also fun. It characterized the mornings, with coziness and warmth, noise and fuss.
But the summer before he turned two, his parents realized that he occasionally had pain in his legs and hips when he woke up.
He didn’t let go of mom’s or dad’s finger either. Although his development was otherwise normal – he crawled, played and talked – he was never able to walk on his own.
Hypermobile joints, the health center said. Eventually became “spasticity» added to the list. It grew. So did the parents’ concern.
The health center was concerned that the parents should not be afraid, right up until the summer holidays.
Ullevål Hospital was then connected. The experts took several tests. But did not explain why. When they were ready to say it, Anders Johansen (41) and Andrea Tronsmo (38) had already googled themselves to the answer.
That didn’t make getting the message any easier. MLD had been the disease they feared most. It is a rare, serious and progressive disease that affects the nervous system.
Life expectancy is four to seven years.
Was too late
Nevertheless, the parents were ready to fight for their son to receive treatment. They knew it existed, although it was not given to children who had already developed symptoms.
– We were crushed and full of fighting spirit. It was a kind of doomsday feeling.
The message from the doctors at Ullevål was that treatment was not possible.
The parents therefore turned to foreign experts. Johansen estimates that they were in contact with 10–20 of the leading people in the field. They knew that dozens of children had been saved in various research projects around the world.
Nevertheless, everyone gave the same message: It was too late.
Ebbe (2) photographed by her parents at Rikshospitalet in December 2022.
Photo: Private
Don’t come home again
In December 2022, shortly after her son’s two-year celebration at home in the apartment, Ebbe ended up in hospital. The parents, who were with him the whole time, thought he would only be there for a few days. But with the exception of a short visit at Christmas, he did not return home.
After constant seizures and pain, Ebbe died in February 2023.
A few months later was the treatment which could have saved him, approved in Norway.
Now it is moving towards that newborn screening for MLD is introduced in Norway. It is the system to find disease among the newborns.
The process has taken almost four years. And the system is still not in place.
Outdated system
In these four years, statistically speaking, four children have been born in Norway with incurable MLD. Meanwhile, dozens of children in other countries have been saved by the treatment that can only be given to newborns.
In 2023, the Ministry of Health said there was a need for a more dynamic system for the inclusion of new diseases in newborn screening.
The Directorate of Health was given the task.
The goal is for a new system to provide more efficient diagnostics, investigation and treatment.
In August 2023, work began. But they’re still at it.
Stein Are Aksnes confirms that the current system in Norway has not been “dynamic enough”. He is head of the National Competence Service for Rare Diagnoses (NKSD).
– The hope is that it will go faster in the future. That we should create a better model that can easily and quickly enter correct diagnoses.
– I didn’t know such horrible diseases existed. You don’t pay attention to things like that until it hits you yourself, says Anders Mathias Johansen, Ebbe’s father. The picture of the son hangs in the hallway when you enter the apartment.
Photo: Charlotte Førde Skomsøy
Blue lights on
Has everyone worked as quickly as possible?
Ebbe’s parents have thought a lot about it.
– I think it would have been easier to accept that Ebbe was born at exactly the wrong time, if we had only known that they were working with the blue lights on, says Johansen.
But to them it doesn’t feel that way.
The explanation from politicians and professionals is that it takes time to change a large system. A system that must be trusted and anchored in the population.
Johansen does not think the words can be compared with the brutal consequences.
– There are general and unassailable explanations. Almost four years have passed.
He also reacts to the fact that the MLD fight has been driven forward by strong voices from parents of children with MLD. Among others Beate Søraunet, who Aftenposten has written about repeatedly.
– This should not be the parents’ fight. It should be the healthcare system’s, says Johansen.
The world unraveled three times, says Anders M. Johansen: First when they found out what illness Ebbe had, then during the painful course, and finally when the parents lost him. Here they are with Ebbe’s little brother.
Photo: Charlotte Førde Skomsøy
“Working continuously”
The Ministry of Health has formerly black that they will process the case as quickly as possible.
Aftenposten has asked the health authorities again why it is taking so long.
State Secretary Karl Kristian Bekeng (Ap) responds to e-mails through a communications adviser.
“I want to start by thanking Ebbe’s parents for sharing the pain they have experienced. The government is working to expand newborn screening so that diseases can be detected and treated earlier and more effectively.”
A proposal will be sent for consultation shortly, it is further stated.
“Then we will be the first country to introduce a national screening for MLD.”
Aftenposten has asked whether the government has worked as quickly as they could in this case
They reply that they work continuously for more effective treatment of new diseases. At the same time, the tests must be safe and the routines safe.
Ebbe’s birthday crown from the second anniversary. The day itself in September 2022 was marked by examinations and illness. Two months later, the parents decided to celebrate properly. – Even if Ebbe didn’t get the treatment, we wanted him to have as good a time as possible.
Photo: Charlotte Førde Skomsøy
Don’t want to be angry
Andrea Tronsmo and Anders Johansen don’t want to be angry. They want to preserve the good memory of their son. At the same time, the grief and despair is all-consuming.
– Ebbe was a robust boy. A little tough guy. When he got sick, we saw how much pain he endured.
– I guess we try to live on in his spirit.
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2024-04-29 22:21:41