Resource persons

The resource persons in Løvemammaene have knowledge, experience and expertise in various areas that concern our work, as well as topics that affect our members.

Our resource persons

More about Beate

Family/Background:
Married and lives on a farm. Is a qualified lecturer with a master's in adapted education. Currently at home with care allowance. Has previously done some work for the improvement of the care allowance scheme. Mum of three, the eldest of whom has metachromatic leukodystrophy (MLD). This is a progressive disease that involves pain and spasm problems, epilepsy, muscle wasting, blindness and early death.

That is why I am a member of Løvemammaene:
Because I want the children's palliation service in Norway to improve, not just for us but for everyone who experiences the loss of a child. I am passionate about everyone having professionals to rely on locally, so that you don't have to travel far with the sick children to find the necessary expertise. I hope we can achieve this, in addition to the fact that all hospitals with children's departments should have a children's palliative care team.

More about Bente

Family/Background:
I am the mother of four and married to the children's father. First we had twins, where the girl is able-bodied and the boy had a severe degree of cerebral palsy. Three years later we had a healthy boy, and a year after that another boy who was eventually diagnosed with a serious progressive neurological disease. The "children" are now adults and have moved from home. Our eldest son died in 2022. I am a trained sociologist and have worked with families who have children with functional variation both in research, in planning and implementing various group offers for parents, including Start-up help.

That is why I am a member of the Løvemammaenes Young Adult Committee:
I am a member of Løvemammaene because I see that the organization is a group of strong mothers and fathers who work actively to improve the situation for families who have children with disabilities. I am passionate about children, young people and their families being understood, listened to and respected when dealing with the support system. I am on the Young Adult Committee because that is where I am now in life. I am concerned with quality in shared housing with round-the-clock care, user participation and dignity.

More about Camilla

Family/Background:
Married to Thomas and have two wonderful boys. Educated in cultural management and works as general manager in Vestfold and Telemark cultural network. Minstemann was born with chronic/pediatric intestinal pseudoobstruction (KIPO/PIPO). This also means that he is fully nourished on intravenous nutrition (TPN), has a PEG and an ileostomy.

That is why I am a member of Løvemammaene:
When children get sick, it affects the whole family. I believe it is important that seriously ill children who have been hospitalized for longer periods have a good environment around the whole family. It should not be the case that it is up to individual people to find good solutions regarding the sibling's opportunity to spend time with the child who is hospitalized. Therefore, the siblings' rights as relatives is one of my heart's issues. There are good opportunities, but I feel that the system around and the recognition of siblings as relatives is lacking. Children as a patient group are particularly vulnerable as they do not always have the opportunity to speak up themselves when something is wrong. This makes me concerned that higher education institutions must work even harder with appropriateness and guidance. It is overwhelming as a parent to have your child admitted to hospital. At the same time as you are in a life crisis, you must still be able to show consideration for other parents and children. I think it would have been nice to have "mountaineering rules" for parents in hospital.

I hope that the committee's work in the long term means that sick children admitted to hospital together with their families have a slightly easier encounter with the system and that siblings always feel welcome with their sick siblings.

More about Carina

Family/Background:
Mother with three children. Eldstemann was born at week 26 after extreme HELLP complications. He has the diagnoses of severe to profound developmental disability, autism and epilepsy. He is currently 19 years old and lives in a care home, while I am the supervisor for his BPA scheme. It is a collaboration between the municipal and private sector in one and the same place. I have been a supervisor for his BPA for 15 years now, both in the home and the transition to own housing.

That is why I am a member of the Løvemammaenes Young Adult Committee:
As a very young mother of a sick child, the battles back then were many and long. I had no idea how tough this world could be as a single mother with a very needy child. Help was almost non-existent until the age of 5. This gave me a strength I never thought existed, at least not for me. The work I have done has secured an existence for my son that he would never have had if I had not fought all the battles along the way. The lion mothers represent exactly that, which is why I have found like-minded people who also fight for theirs, and not least who are trailblazers for those who come after. The latter is one of the most important tasks we in the Løvemammaene have, namely to help those who come after us so that they will release the struggle for existence on top of having children with illness/disability.

More about Eline

Family/Background:
I am married and have three children aged 27, 23 and 20. Fredrik is the youngest. He has Down syndrome and some other additional diagnoses. He is currently in his fourth year of high school. He still lives at home, but is increasingly on respite in an institution. I work as a teacher in a secondary school where I teach Norwegian and jurisprudence.

That is why I am a member of the Løvemammaenes Young Adult Committee:
I am part of the Løvemammaenes Young Adult Committee because we had so many surprises when Fredrik got older - both in terms of the health care system and other municipal services. We saw that we had little knowledge about all the changes in connection with the transition to upper secondary school, and even more about how much you had to familiarize yourself with when he turned 18. Gradually we gained more and more insight, and it is this competence that I hope to be able to use in the committee so that other families in the same situation can perhaps be a little more prepared than we were, and that they can get some tips along the way. Right now we are in the process of establishing a private housing community together with five other parent couples and their young people. In addition, we have to find out what Fredrik is going to do in the autumn when he finishes high school. I believe in sharing knowledge and experience, and I think this committee can be a good starting point.

More about Eylem

Family/Background:
Married to Deniz and have two children, a 17-year-old boy and 14-year-old girl. Qualified kindergarten teacher and has worked with differently abled children. Our boy has a rare and serious progressive mitochondrial disease that has been described in four other children worldwide. He developed age-appropriately until approx. two years of age. Today he is in complete need of care due to loss of gross motor skills, but cognitively he is age appropriate and above average in some areas. He has button (tube feeding), baclofen pump and CPAP at night.

That's why I'm a member Løvemammaene:
We have been in and out of hospitals a lot, and over the years we have come to know what works and what needs to be developed and improved. Seeing the family as a whole and having measures that look after the whole is something we miss. I see it as necessary and important for everyone who works with children to gain skills in order to be able to meet families in the best possible way. Cooperation between the specialist health service and the municipality must also be developed. As it is today, it is random and far from good enough. Perhaps children would have avoided being placed in a nursing home if the cooperation had been better. Being a messenger between the various agencies is both burdensome and a strain on parents. I have a wish and hope that everyone will get the help they need, are entitled to and need regardless of who, what and where they are.

More about Karoline

Family/Background:
Engaged to Daniel. Works as an ambulance worker. Together we have two boys, Theo and Noah. Theo has septo-optic dysplasia, ornithine transcarbamylase deficiency. The disease has a wide spectrum, but he is, among other things, blind and has a severe pituitary failure.

That is why I am part of the Løvemammaene's nursery and school committee:
I am passionate about universal design! Everyone in society MUST be given equal opportunities to participate actively in what they want without it meaning that one has to take a detour, a back road or, in the worst case, cannot participate. It makes me sad that people with special needs should be discriminated against from society because it is too poorly organised.
I want to achieve a society that is organized and adapted to everyone, so that everyone can participate in/do what they want. Whether that means guide lines in the floor, or whether it means zero stairs in the cinema hall – everyone has the right to live an active life and do what they want without unnecessary obstacles.

More about Kristine

Family/Background:
Mother of three children, two who are starting to grow up and one I will lose in May 2020. I am married to the father of all of them. We lost our attpåklatten, Ingmar, in May 2020 when he was seven and a half years old. Ingmar was diagnosed with CGD, a rare and serious immunodeficiency, in the autumn of 2016. In the autumn of 2017, he received a bone marrow transplant at Rikshospitalet in Copenhagen. The hope and the plan was that the transplant would cure him, but he had many complications from the transplant where the immune system never regenerated and the disease picture constantly changed. He spent the rest of his life in hospital isolation almost continuously, apart from a couple of months right after the transplant where I was at home and only visited the hospital a few times a week.

That is why I am a member of Løvemammaene:
We had to fight many battles for our son during the years he was ill. Through the Løvemammaene, I discovered that the same battles were also fought by several people. I both want and have to use my experience for something useful. Parents who are in a stressful situation with a sick child should avoid having to fight the same battles as us. It must not be arbitrary whether the laws are followed or whether the sick children have their rights fulfilled.

I want to help influence so that the sick children get the medical treatment they need, regardless of what diagnosis they have, who they meet in the system and where in the country they live. I want to work to ensure that procedures are established so that the sick children and their guardians get the information they need to know what rights they have, to reassure them that the medical treatment they receive is good and so that they know what offers they can take advantage of. I want to work for the hospital to make arrangements for the quality of life here and now to be good, just as much as for medical procedures to be carried out, so that the children can be children and not become patients. I want to work to ensure that the laws that are supposed to protect children in health institutions are followed regardless of where you live and what diagnosis you have. I also want to be involved in working to ensure that children who receive treatment at health institutions in different countries, different places in the country or in different bodies are well coordinated in the treatment in the different places. I dream of Løvemammaenee being so big and so strong that no matter what diagnosis you have, you have a strong patient association behind you.

More about Marianne

Family/Background:
I am married and have four children. Hanne, my 19-year-old daughter, has CP dyskinesia. She has a body that doesn't do what she wants, but she still gets to control her life. She speaks with her eyes with a Tobii (computer), and has proven time and time again that "Language is power!". She has a language that allows her to realize her potential, both at school and at home. She has probably passed 50,000 symbols/words in her communication book, and also writes to supplement. Symbolic language/ASK is her mother tongue. I am a qualified teacher and have a basic law degree. I have worked for ten years in primary school, and since 2008 have run my own company to help other children to a rich language with symbols/ASK.

That's why I'm in the Løvemammaene:
I have worked politically with rights and expertise around ASK for the 7,500 children who need this since 2006. I have been involved in Parliamentary proceedings, ministerial proceedings etc. and feel that the user perspective is not important in the bureaucracy. I want to make a difference for the children who need ASK. I know many children throughout the country, I know the systems around children locally and upwards in the system, I know the lines both in relation to state competence and aids. There are big differences in relation to where you live, what you get and get help for. It cannot be random whether you learn to speak or not. Right after pulse and breathing comes the importance of a language for me. I have experienced that not only do the children change when they learn a language, because their personal development really accelerates, but the system around them also changes. Children who can prove that they know something and can learn get a completely different focus, especially in school. Then, for example, the focus on reading and writing training often becomes completely different.

Every single day I feel the value of a language, the magic of being able to say what you think and want. What it does to Hanne and what it does to the way we relate to each other. I want to contribute to more children and parents being able to experience this! Language is the prerequisite for learning, all learning. So I hope that as Løvemamma I can contribute and make a difference for the children who will grow up with sign language/ASK.

More about Martha

Family/Background:
Single with two children born in 2018 and 2019. The eldest was born with a rare gene mutation (MAND) and has delayed development, as well as epilepsy due to this. This has led to many challenges and she has a lot of follow-up both in the specialist health service and the municipality. The youngest was born with impaired hearing and uses a hearing aid. I am a full-time lecturer student, but I am also a qualified primary school teacher from the USA.

That's why I'm in the Løvemammaene:
Kindergarten and school are an extremely large part of children and young people's everyday life, and since it is such a large part of their everyday life, it is important that it works for each individual child. With the systems we have in place today, children with functional variation are often left with the worst offer. I want the nursery and school to be suitable for everyone, and make it possible for everyone to participate in everything.

More about Bodil

Family/Background:

That is why I am a member of Løvemammaene:

More about Bente

More about June

Family/Background:

That is why I am a member in Lthe practicing mothers:

More about Bettina

Family/Background:
Chairman of the Løvemammaene, with responsibility for this committee. Lives in the Stavanger area.
Married to Robin and together we have 3 children born in 2011, 2012 and 2013. Involved in the community and passionate about helping families like mine!

That's why I'm in the Løvemammaene:
We have a serious social problem when only 1/3 of Norwegian schools are universally designed, while at the same time the number of children who need help is increasing. All children and young people with illness and functional variation have the right to participate on an equal basis with other children. Mental health, the right to special education, unjustified reports of concern to child welfare in the case of involuntary school absence and early intervention are important issues for me.

More about Eline

Family/Background:
Married. Trained educational-psychological consultant, and now works in PPT. Has worked for over 20 years in the specialist healthcare service with bereavement support work, both as clinical practice and through research and teaching. Mother of two boys, the youngest child had a rare syndrome and a progressive variant of the disease CIPO. He died aged 10 in 2017, after being seriously ill all his life.

That is why I am a member of Løvemammaene:
I am passionate about looking after relatives and survivors. Particular understanding of young children's grief and follow-up in the nursery, and young people's grief and follow-up within the school system.

I want real options for all families with seriously ill children, which can enable as good a life as possible while the child is alive and follow-up afterwards, regardless of geographical affiliation. To be able to live at home with children who have complex medical needs, in as close to a normal family life as possible. We want to shed light on the diversity of needs, wishes, shortcomings, sustainable solutions, unique and special situations as well as common challenges and opportunities that lie in the field of child palliation. The lion mothers represent the inclusive breadth and diversity that is necessary to promote the development of child palliation even more steps forward in a good direction. Today, it is too random and unsystematic which help and opportunities families get, and the differences between and within municipalities too great. We need rights and guidelines that ensure a child-centred, equal and fair framework for follow-up.

More about Anne Kristine

Family/Background:
Married, qualified accountant and works as a special auditor in the tax authority. Mother of 3 children. Mellomste was seriously ill throughout his life and died aged 12.5. When he was 1.5 years old, he was diagnosed with a previously undescribed chromosomal abnormality. He had a serious illness that required round-the-clock advanced medical treatment.

That is why I am a member of Løvemammaene:
Passionate about better support and relief arrangements for families living with seriously ill and dying children. The importance of good municipal respite services for very medically ill children, and good empathy, I believe is crucial for the families living with serious illness to be able to live in such a "crisis" year after year. I know firsthand what a life of many years in emergency preparedness and round-the-clock medical care entails.
I want to achieve the establishment of 24-hour interdisciplinary pediatric palliative care teams from each health region. The expertise must come from the specialist health service that knows the child and the family. The offer must include support and guidance to the municipality so that good respite facilities are established where the children and families live their lives.

More about Gunn Helen

Family/Background:
I have three children aged 5 to 15 years. I am the mother of a lovely 14-year-old girl, who has a rare gene defect KCNQ-3. The gene error involves diagnoses such as epilepsy, autism, developmental disability and progressive dystonia. I am a qualified social worker and have many years of experience in child protection.

That is why I am a member of the Løvemammaenes Young Adult Committee:
In addition to being a board member of the central board of Løvemammaene, I am also a member of the Young Adult Committee, in order to achieve better and easier transitions on the way into adulthood for our children. As our children grow, the distance and differences between services and the support system only get bigger and more complicated. I am lucky to be able to influence, and am particularly passionate about ensuring that all children and young people have the same rights and equality, regardless of where they live or the resources and surplus of their parents.

More about Mabroor

Family/Background:
Married. Mother of two fantastically beautiful children, the youngest of whom was seriously ill all her life, and died in 2020.

That is why I am a member of the Løvemammaenes child palliation committee:
I am part of the Løvemammaenes Child Palliation Committee because I am passionate about ensuring that children and young people who are about to die receive dignified follow-up and treatment throughout their lives. I am concerned that relatives and the child have real opportunities to live as they wish. I believe it is crucial to establish local children's palliative care teams, and that these are assigned the competence and resources needed to operate. It should not be random who has a hand to hold when death approaches.

Keywords for me: Dignity, communication, integrity.

More about Thea

Family/Background:
I am a young adult with a rare congenital diagnosis that causes tremors/twitching in the hands and poor balance. The diagnosis means that I struggle with tension and have a lot of pain in my muscles. I am currently training to become a social worker, while also working in environmental therapy services.

That is why I am a member of the Løvemammaenes Young Adult Committee:
I am part of the Løvemammaenes Young Adult Committee because I am passionate about everyone having a good transition from child to adult with proper and good follow-up. I think it is crucial to have a good transition to be able to reach where you want in adulthood. I am particularly concerned that early on there must be interdisciplinary follow-up in relation to preparation and planning for working life, as a young adult with challenges you must receive good guidance on what opportunities and rights you have in relation to working life.