– Madeleine was ill for exactly 70 days, and on the 70th day she fell asleep in my arms, until sunrise.
That’s what Lisbeth Groven Stene says, who experienced the loss of her daughter Madeleine Holth earlier this month. Holth was a well-known figure in Norway’s fashion industry, and worked as a journalist, creative consultant and lecturer.
Holth, who was only 31 years old, reviewed collections and fashion shows for renowned magazines such as Vogue and Interview. She was a well-known figure at fashion weeks in Europe, and shared her passion with students at SoFI (School of Fashion Industry), where she lectured.
Hidden serious illness
Mother Lisbeth has always known that her daughter would not have a long life. Madeleine was also aware of this, she says.
– Madeleine has been ill all her life, but has hidden it very well. Not many people knew she was born without an immune system. She never behaved as if she had a chronic illness. Madeleine stayed fairly healthy, to have immune deficiency, she continues.
MOTHER AND DAUGHTER: Madeleine Holth and her mother Lisbeth Groven Stene had a close relationship. Photo: Private
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Unfortunately, this was to turn around.
After Madeleine’s 31st birthday, April 30 this year, Madeleine became seriously ill. The following month, she was admitted to Rikshospitalet.
– She got the JC virus (explanation below, journ.anm.), And it is very critical for anyone who has had a transplant, cancer, HIV, MS or immune deficiency, says Lisbeth.
SERIOUSLY ILL: Madeleine contracted the JC virus in May. She got worse and worse, before she finally fell asleep in her mother’s arms. Photo: Private
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That it was JC virus Madeleine had been diagnosed, they only found out after several examinations, as well as an extensive brain operation. The next step was to give Madeleine some form of chemotherapy from which she would receive three doses.
– After the first dose, there was no change. They tried to give her a dose of two, but the next day the doctors decided to stop the treatment.
Madeleine got worse and worse every day.
JC-virus
- JC virus is a polyoma virus, which in immunocompromised people can cause disease of the central nervous system.
- 89 different species of polyomavirus have been identified, but only a few have been shown to cause disease in humans, the most important being the JC virus and the BK virus. These viruses are very common, but rarely cause disease and then usually in the immunocompromised.
- Most people become infected with the JC virus during childhood, the virus is latent and disease in immunodeficiency patients is primarily due to reactivation.
- The disease is fatal in 20-30 percent, and it often causes permanent neurological damage.
Kilde: FHI
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– The last two weeks she was relatively «gone». She lost her sight when the virus had attacked the visual center in her brain.
“Mom loves you”
During the past week, the mother spent every minute with her daughter.
Truls Svendsen lost his father
– I lived in the hospital, and I did not sleep the last three days. I did not dare because I was supposed to be there. Madeleine was supposed to be in my arms when she fell asleep. It was something I had decided on.
And Madeleine fell asleep in her mother’s arms. She is very grateful that Lisbeth said goodbye to her daughter.
GOOD MEMORIES: Lisbeth Groven Stene and her daughter experienced a lot together, and the former is happy that she is left with many good memories. Here, Madeleine is depicted in her youth. Photo: Private
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– I got to say everything I had on my mind. When Madeleine could not talk at the end, and I said: “Mom loves you”, I got a “mmm” in return. Then I replied: “I know you love mom”, because that was how I interpreted it – and I can live on that for a long time.
Lisbeth is left with many good memories with her daughter. One of them is a weekend they spent together after she became seriously ill.
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– Then we took manicures, ate good food and laughed and chatted together. I slept next to her, and when she woke up the next morning she was lying and looking at me, even though she could not see me. Then I just heard: “Good morning mom”. It warms a mother’s heart from here to eternity, she says.
Recently, Madeleine was admitted to Lovisenberg Diakonale Hospital. Lisbeth praises the employees in the clouds for the help and support she has received.
In grief – lost his newborn son
– I can not forgive them enough. The treatment and support we received has been completely unique. I myself have worked in a hospital for 20 years, but have never experienced anything like it. I take my hat off to those who work there.
Was on guard all the time
Madeleine was only two and a half years old when they were told that she was born without an immune system. This led to her as a child receiving medication once a week, in the form of blood plasma into her body.
BORN WITH IMMUNE FAILURE: When Madeleine was two and a half years old, the family was told that she was born without an immune system. Photo: Private
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– She had no immune system. That is, if there were chickenpox in kindergarten or school, she had to go out because she could die of chickenpox. She was not very ill, but I had to be on guard all the time, because I never knew, says Lisbeth.
– When she was 15-16 years old, she started the medication herself, and she stayed healthy. She was lucky compared to other immunocompromised patients.
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Mora points out that the daughter has nevertheless had a tough life. As a 16-year-old, she contracted ovarian cancer and had to have her ovaries removed.
– Then she could not have children, and for her it was sad, since she really wanted to be a mother. She was probably more concerned that I should become a grandmother, but as I said to her: “I shit in that, as long as I can have you.”
In 2009, Madeleine lost her father, and a few years earlier, her grandmother died. Both were very close to Madeleine, according to Lisbeth.
– She was very strong, and I am incredibly proud of her, says her mother.
Lost father: – Traumatic
– Illuminated the room
Since the death became known, after Lisbeth told about it on social media, condolences have flowed in. Some condolences warm the mother’s heart a little extra.
Madeleine was an active member of an American organization that works to improve the living conditions of children and adults with a form of immune deficiency (Hyper IgM Foundation). There she shared her medical history and gave other parents advice, so that it would be easier to cope with everyday life with immunocompromised children.
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– I have received many condolences from them, where they thank Madeleine for giving them advice, good guidance and for telling her story. It warms a broken mother’s heart. I get very moved when I read these condolences.
When Dagbladet asks how she would describe her daughter as a person, it is difficult for Lisbeth to know where to start.
Immunsvikt
- Primary immune deficiency is a collective term for a number of rare diseases, with deficiencies in various parts of the immune system, which can affect antibody production, T cells and the complement system, among other things.
- The diseases are associated with an increased tendency to infection and / or autoimmune disease. Many of the immune deficiency diseases are hereditary, and the genetic cause is known by a number of them. The different diagnoses have different heredity.
- The clinical spectrum of immunodeficiency diseases ranges from very serious congenital disease, to mild forms that can manifest in adulthood.
- Some common symptoms are unusual infections, poor effect of antibiotics, poor weight in children, severe reactions to live vaccine and autoimmune disease.
- Treatment depends on the cause and ailments. In some severe forms, stem cell / bone marrow transplantation is relevant.
Source: Oslo University Hospital
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– Madeleine was always the one who lit up the room and always in the center. She was a little dramaqueen, but also a diva. When she was little she refused to wear the same socks, she always had to wear a different color.
– Completely unique
She takes a break before sharing a pleasant memory:
– When she was four or five years old, she took an old cassette tape in her hair, and I said: “My girl, you can not walk like that.” Then she replied: “But, mother then. It’s fashion, you know that ».
Lisbeth laughs heartily through the phone as she is drawn back to that very moment.
FASHION QUEEN FROM YOUNG AGE: Madeleine’s mother does not hide that her daughter was interested in fashion from childhood. Photo: Private
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Lisbeth describes her daughter as completely unique, a person who never took herself seriously.
– She was just as happy with herself, whether she had war paint or not. It did not matter. She is my “pride and joy” – it even has a tattoo on my arm.
According to Lisbeth, Madeleine originally wanted to become a dancer, but this could not be done due to the disease. The choice eventually ended in the fashion subject, where Madeleine studied at the London School of Fashion.
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– Madeleine never gave up. She was always very stubborn and quick-witted, she inherited that maybe a little from me, Lisbeth chuckles, before she adds that there has always been a full mill around her daughter.
Plan your own funeral
Next Monday, Madeleine is to be buried. Then 75 guests will say a final goodbye to the fashion journalist. Madeleine herself has planned the funeral for a long time.
– Stunned by shock
– She is the one who has chosen everything, except for one song that will be played when we leave the chapel. She always said what she wanted. Madeleine wanted Vivaldi’s four seasons, “3055” by Ólafur Arnalds – she had it tattooed on her arm – and “O weekend night”. It was the song his father also had at his funeral. It was their song.
Lisbeth dreads Monday.
– I have the benefit of breaking down completely, because I have to finish this funeral. That’s what’s important to me now, that it should be in Madeleine’s spirit. Then I get to take the mourning period afterwards, Lisbeth says quietly.
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