6-year-old Ronja steers her electric wheelchair into the doors of a red brick building. There is a department for pediatric palliation here. A ward for children with life-shortening illnesses. – Finally, says Ronja when she is there. Photo: Siv Johanne Bjørkly Seglem / news – Finally, says Ronja when she is there. Photo: Siv Johanne Bjørkly Seglem / news Ronja has been here before. Now she will be here for four days without her family. She is looking forward to it. I think several things are nice here. – The room. – Baby….bed. Ronja has talked a lot about this bed after she was here on respite care last time. Photo: Siv Johanne Bjørkly Seglem / news This bed Ronja has talked a lot about after she was here on respite care last time. Photo: Siv Johanne Bjørkly Seglem / news Ronja was born with a serious, hereditary metabolic disease. She is one of ten people in this country who has the metabolic disease methylmalonic acidaemia. Ronja lies in bed and smiles at her dad. Photo: Siv Johanne Bjørkly Seglem / NRKRonja lies in bed and smiles at her dad. Photo: Siv Johanne Bjørkly Seglem / news Ronja’s liver is not doing everything it is supposed to do. Harmful substances can accumulate in the blood. Ronja has what is called a life-limiting illness. Professionals assume that around 8,000 children and young people are in the same situation as her in Norway today. Complicated illnesses The ward Ronja has come to is for children and young people in her situation. Right after Ronja arrives at the ward, she wants to play in the ball pit. Photo: Siv Johanne Bjørkly Seglem / NRKR Right after Ronja arrives at the ward, she wants to play in the ball pit. Photo: Siv Johanne Bjørkly Seglem / news It opened in May last year, is run by the foundation Nordre Aasen and receives support from the Directorate of Health. – We welcome children and their families. There are children with complicated complex illnesses who very often are not at the end of their lives, says Anja Winther Gjelseth of the Nordre Aasen foundation. Child palliation is not the same as adult palliation. For adults, it is often about cancer. That they receive nurturing and care in the last phase of life. Anja Winther Gjelseth is head of the child palliation project at the Nordre Aasen foundation. Photo: SIV JOHANNE BJØRKLY SEGLEM / NRKAnja Winther Gjelseth is head of the child palliation project at the Nordre Aasen foundation. Photo: SIV JOHANNE BJØRKLY SEGLEM / news – Children can live under a palliative care term for almost their entire lives. They can live a long time. When the department opened last year, the idea was that children with incurable illnesses and life-shortening conditions could come here and receive treatment, care and care for the rest of their lives. Preferably with his family. This has not been the case. – Parents will be at home. Children want to be at home in their environment and siblings need to live their everyday lives next to seriously ill siblings, says Anja Winther Gjelseth. Ronja is doing homework. Here she gets help from nurses Marte Tonning and Pernille Martinsen. Photo: Siv Johanne Bjørkly Seglem / NRKRonja doing homework. Here she gets help from nurses Marte Tonning and Pernille Martinsen. Photo: Siv Johanne Bjørkly Seglem / news A respite in everyday life But families contact them to get relief. Both at home and in the ward. – Many people want this as a respite in a very demanding everyday life. This is also the case for Ronja’s family. And they do not want their daughter to live anywhere other than at their home. – Ronja will live at home with us 24/7, says her mother Ása Birna Aðalsteinsdóttir. – She is part of our family. When she is with her two brothers, they are absolutely perfect together. Moved to Norway Ronja was born in Reykjavík, Iceland. The mother says that the family was advised to move to a Scandinavian country so that her daughter would have a good life and good follow-up. When Ronja was 16 months old, the family moved to Norway. – Everything was so nice. Despite the illness, Ronja was a social and active child who liked to have fun. She was happy to play outside The day everything changed But one October day in 2019 Ronja suddenly started crying non-stop. She opened her eyes. Caught breathing. Started vomiting. The family threw themselves into the car and drove to the Rikshospitalet in Oslo. After ten days in the intensive care unit, she was hospitalized for three months. Photo: Privat After ten days in the intensive care unit, she was hospitalized for three months. Photo: Privat It turned out that the little girl was affected by a metabolic crisis. Since her liver lacks an important substance, the ammonia content in her blood had skyrocketed. She suffered a brain injury. – We just thought she was going to die, says Ása Birna Aðalsteinsdóttir. Ronja has many additional diagnoses. She needs help with everything in everyday life. The parents must check all the food she ingests and everything that comes out again and keep lists. Photo: Siv Johanne Bjørkly Seglem / news The parents must check all the food she ingests and everything that comes out again and keep lists. Photo: Siv Johanne Bjørkly Seglem / news Don’t know what Ronja is thinking Ronja doesn’t speak much, but can say single words. The 6-year-old understands that she is not like other children who can run and move freely. And she is aware that she is ill. – She knows that if she vomits more than twice a day, she has to go to the National Hospital and stay there for at least a week. But what the 6-year-old thinks about the situation she is in, no one really knows. – Ronja can’t communicate well enough to explain it, says the mother. Rammer family Ronja receives physiotherapy, occupational therapy and help from PPT. Here is Ronja with her family. Father Bjarni Gunnarsson, mother Ása Birna Aðalsteinsdóttir and her two older brothers. Photo: Siv Johanne Bjørkly Seglem / NRKHere is Ronja with her family. Dad Bjarni Gunnarsson, mum Ása Birna Aðalsteinsdóttir and her two older brothers. Photo: Siv Johanne Bjørkly Seglem / news The parents get relief at night, three hours two afternoons a week and 11 hours every second weekend. They have applied for BPA 24 hours a day, but have been refused. Even if the family gets some relief, one of the parents must always be at home. It characterizes the family. According to the mother, Ronja’s brothers do not get as much attention from their parents as they need. She thinks they suffer a little because they have a seriously ill little sister. – They have never been on holiday with us. This life is not normal. It affects them a lot, says Ása Birna Aðalsteinsdóttir. Aðalsteinn (14) plays drums in a band in his spare time. Baldur (9) plays football. They want people to know what it’s like to have a seriously ill sister. The boys spend a lot of time helping Ronja play. Ronja plays doctor on her teddy bear with her big brothers Baldur Þór (9) and Aðalsteinn Máni (14). Photo: Siv Johanne Bjørkly Seglem / NRKRonja plays doctor on her teddy bear with her big brothers Baldur Þór (9) and Aðalsteinn Máni (14). Photo: Siv Johanne Bjørkly Seglem / news Aðalsteinn sometimes also gives her little sister food and medicine. One miss is that both parents are present when he performs with his band. – Our parents cannot do so many things with us. He feels that he has a different life than his friends. And that he is not as active as them. – I get a little tired when I help my little sister play. Baldur finds it difficult that he cannot help his mum and dad like his older brother does. – I haven’t learned it yet. And he thinks the parents spend a lot of time on Ronja. – I’m sorry that my little sister gets sick all the time. The boys are followed up by a health nurse at the school. Ronja receives various medicines seven times a day. Photo: Siv Johanne Bjørkly Seglem / NRKS Seven times a day, Ronja receives various medications. Photo: Siv Johanne Bjørkly Seglem / news For the parents, there will also be little time to nurture the couple’s relationship. Only once have they been out alone to eat together after the family moved to Årnes. Being the mother of a child like Ronja describes Ása in four words. – Tough. Sad. Raw. Difficult. What does the situation do with a mother’s heart? – It is tough to see your child getting sicker and sicker. It’s hard to know that she won’t be with us for many more years. Thinks a lot about death According to the doctors, Ronja will not experience becoming a teenager. The mother has many different concerns. She is afraid that her daughter will have another metabolic crisis. Since the family has no network in Årnes, she is, among other things, worried about who will pick up or take care of the sons if they are not at home when Ronja dies. Ása Birna Aðalsteinsdóttir has many worries about her daughter. Photo: Siv Johanne Bjørkly Seglem / NRKÁsa Birna Aðalsteinsdóttir has many worries about her daughter. Photo: Siv Johanne Bjørkly Seglem / news She is also worried about marriage and what family life will be like after her daughter is gone. And she thinks a lot about funerals. Among other things, how it should be and where. – Should we move back to Iceland afterwards or should she be buried in Iceland? – Na..ta Another day is coming to an end in Ronja’s life. With the help of a lift, Ronja gets safely into place in her bed. Photo: Siv Johanne Bjørkly Seglem / NRKV With the help of a lift, Ronja gets safely into place in her bed. Photo: Siv Johanne Bjørkly Seglem / news At home, she has her head safely placed on the pillow with Winnie the Pooh cover. Dad holds out two toothbrushes. Ronja grabs one. Put it in your mouth. Chew on it. – Shall I help you, says dad. No, says the 6-year-old firmly. Ronja brushes her teeth herself. Dad reads in an index book. A lamp makes stars in the room. – Natta Ronja, say dad and Baldur. – Na..ta, replies the 6-year-old. Can charge the batteries When Ronja is on respite at Nordre Aasen, the family can relax for a few days. The daughter feels safe there. She likes the employees very much. – It feels good in the heart, says Ása. If something were to happen to the daughter, the road to Rikshospitalet is not long either. They have knowledge about children like Ronja and know everything about her. – It feels good to know that she is then in safe hands. The stay should give the family a long-awaited breather in the run-up to Christmas. Mum and Dad should do something nice together as a couple. Make something up with your boys. – We need to recharge the batteries a bit in everything we are up to. Hope for the daughter But this time the stay was not as anyone had imagined. On the first evening, Ronja started vomiting. She was admitted to Riksen. The parents have several hopes for their daughter. That she should be fine. Feel safe. That they can keep her longer than the doctors say. – We also hope that she can be as painless as possible, when the time comes that we have to say goodbye to her, says Ása Birna Aðalsteinsdóttir. Once, the parents received advice from Ronja’s doctor. They follow that. – We live every day as if it were her last. Hi Did you get any thoughts while reading this article? Feel free to send me an email! I have previously written, among other things: Do you have any tips for other matters I should look into? I treat all information confidentially. Feel free to contact me!
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– We want Ronja to live at home
