NEGATIVE CONSEQUENCES OF THE NEW CARE PAYMENT SCHEME

Letter sent to Labor and Social Affairs Minister Anniken Hauglie.

The new care allowance scheme has caused a great deal of debate this autumn. We are many parents, in addition to paediatricians and interest organisations, who have warned against a number of negative consequences of the new scheme. Our concerns have spread widely in social media, in the press and in the Storting.

In the Storting's question time on Wednesday 8 November, Labor and Social Affairs Minister Anniken Hauglie said that "It is too early now to say that this has dramatic consequences." The scheme came into force on 1 October, so far no one has come under the new scheme." To Dagsavisen on 19 October, the minister stated that "

In question time on 18 October, Prime Minister Erna Solberg told the Storting that "It is like that from 1 October, when the scheme has come into force, everyone has to start from zero. This means that everyone gets a time account from now on, so that next year there will be no changes to what is, for some families."

This is outright wrong. We would like to correct the minister and the prime minister when they claim that no one is affected by the new scheme. We have collected stories from families who are in the crisis of their lives, who work day and night to care for their sick children, and who now, with the introduction of the new scheme, also have to spend energy worrying about the family finances. Some of the stories come from parents who received care allowance in the past, but who no longer need care allowance. They tell how the scheme would have turned out for them, had it existed when their children were ill.

In the budget negotiations, KrF helped the government to reverse two of the severe austerity measures introduced in the new scheme. It is very gratifying that KrF got the go-ahead to remove the income reduction, and that exceptions are made to the age limit for people with developmental disabilities. Nevertheless, there is one important point that remains: The time limit of five years (1,300 days) must be removed. It affects families with children who are seriously ill over a long period of time, children with serious progressive illness and children who are seriously ill over several periods during childhood.

We hope the minister takes the time to read these stories, and thus build up an understanding of the concerns the new care allowance scheme has caused for some families. They feel the consequences on the body already now.

Many have expressed that they find it very tough and difficult to tell their own and their child's story. They should preferably have seen that it was not necessary to go to the step of handing over theirs

There is no reason to

worry or haste, because the only difference in the next year is that several thousand more

families receive care money.”

children's illness histories, their family finances and their worries. Nevertheless, they see that this is what is needed to increase understanding of the challenges they face.

Sincerely
Helle Cecilie Palmer
On behalf of the action group "Change to the care allowance scheme now" and many concerned parents.

In April 2013, our son got cancer, a shock, but at the same time a good experience to meet a healthcare system that was really committed to making him well again. He was intensively treated for a year, including several months abroad for advanced radiotherapy. Both parents were present, with childcare allowance, during the entire treatment. All three of us almost lived in the hospital for a whole year.

At the end of the treatment, we were quickly back at our jobs and we had 2 good years with "no illness".

After all, cancer is what cancer is, and in April 2016 there was a severe relapse. We knew what this meant. There has been no development in survival for this form of cancer in case of recurrence for 20 years, and we were given very poor prognoses.

Again, there were intense chemotherapy treatments for a year, and in March 2017 there was nothing to do but begin life-prolonging treatment in the form of chemotherapy. This time, too, we have both been present to take care of our boy and to survive as a family. He has both delayed injuries and side effects that I can't bear to get into here.

Our boy is not going to survive. But we are lucky to have been given a "normal" everyday life for a limited period of time where he receives chemotherapy at the same time as he gets to be with friends, and goes to school as much as the treatment and his condition allow.

Now we have just received a letter from NAV stating that they will reduce our care allowance percentage since he can go to school for a while. OK, that's one thing, and I could have written a lot about those rules as well. At the same time, it's good to feel like I'm at work again. Because that is the normal thing that we would most like to have back. But to call us parents dream workers is probably taking it too hard.

But we know that there will be new tough times, there will perhaps be a phase with experimental medicine (phase I trial) and then there will be the "relieving" phase where our son will die.

In all this we must take care of what we have built up, our lives and little sister who was born just before the cancer returned. We are of course concerned. Will we be able to "afford" to be present until the very end and give our son security in the face of death.

Commuting back and forth to the hospital from a possible job (4 hours round trip, possibly 12 hours round trip if admitted in Oslo) is not good enough for our son. He will feel safe all the way, and we probably dread this time.

When I "count" the days that have passed since our son's illness, we soon reached the ceiling of 1,300 days, and we would have long since decreased in payments if the new rules had been in force from 2013. It's just that we are not finished yet, and there will be more after us. Although 4 out of 5 children survive their cancer diagnosis, some also after relapse, 1 out of 5 die. Neither part necessarily happens within the "standard" time.

Cancer mom

My daughter was born healthy, but had meningitis and encephalitis when she was five months old. She was in hospital for six weeks. Now, almost two years after she fell ill, her condition remains serious and unstable. She has a serious brain injury, cerebral visual impairment, cerebral palsy and epilepsy which is very difficult to treat. We hope and believe that the specialist doctors will find a medicine that keeps the epilepsy in check. Then she will have better days, and I will be able to work again. But I'm afraid the care allowance will run out far too soon. My daughter will probably need medical follow-up throughout her life, both because of epilepsy and because she has cerebral palsy of such a nature that there is a risk of crooked positions requiring surgery. 1300 days is not enough when the diagnoses are as complex as my daughter's. I am afraid that I will have to leave my working life because I have to be at home and care for her during unstable periods, even after the care allowance quota has been used up.

Helle Cecilie Palmer, mother of Aurora (2 years)

Our two-year-old son was born with a serious heart/lung defect. No doctor has seen a similar error before, either in Norway or abroad. During his first year of life, we spent about 8 months in hospital. 3 open heart operations, a lung removal, countless heart catheterizations, countless days on a ventilator. ECMO treatment and triple therapy with whatever medication is possible for his diagnosis. In the first year of life, the mother's leave was postponed and the father also had 100% care money to help when the son's weather was so unstable and bad that even screaming caused him to pass out, which could be fatal for him when he closed off his lungs due to high pulmonary pressure. Mother is still at home as he has not been allowed to go to nursery school and is still regarded as life-threateningly ill. We hope the latest intervention will help him, but no one knows yet. There is no conclusion with our son. He is completely unique with his faults. Now that it is calm, mother intends to try her hand at work again while father stays at home for a while. We worry because we don't know what lies behind the next bend. If he does not get better or if you manage to keep him stable, he will die within a very few years. He will not become acutely ill, but his heart will gradually fail. He cannot get a new heart as it is the one lung he has that is not working. Lung transplantation in children is not carried out in Norway. What will he be seen as i

the system then? Permanently ill? Progressive? The status at the moment is life-threatening. If he had been born now, we would have used up the quota quickly. Since all interventions he has had have required both parents to be present. And we also live on the other side of the country and have two more children. Having an income and not having to worry about this has been absolutely necessary. In the beginning, it was doctors and social workers who fixed it as he fluctuated between life and death every day. You don't just have a normal 8-4 job with such a sick child. There has been medication, feeding, round-the-clock observation. 24/6 job for two adults. In addition, we had to take care of the siblings. It has been rock hard.

Worried mother of a 2-year-old boy with a serious congenital heart defect

Angelica got cancer in 2012, was declared healthy in October 2014, and had a relapse just before Christmas that year. I myself have had cancer now 5 times in the last 10 years and am on disability benefits. My husband has received care allowance while our daughter has been ill.

Things went very wrong with our daughter in the spring of 2015, she suffered multi-organ failure from harsh treatment, all organs collapsed, she was in a coma for several months, and we were losing her every day. Life-threatening HLH, and complications with encephalitis, epilepsy and convulsions have caused her permanent brain damage, she has lost her short-term memory, and after the stem cell transplant that was needed to overcome the aggressive cancer, she developed stomach and intestinal problems. She is now still fully nourished with tube feeding, through an opening in her stomach and tube from there. We spend a lot of time every day managing food and cooking and storing food. Our daughter requires 24/7 supervision, is almost like a slightly confused senile person, who you can never let go of, we sleep with her, one of us and almost take her in the shower, even though she is 12.5 years old. Drives to school and waits for the assistant to come and follow her into class, and the same at the end of school. Accompanying physio, therapy riding and therapy swimming. Often meetings during the day, neuropsychologists, ppt, responsibility group meetings etc etc, as well as the fact that she often has 1-3 doctor's appointments a week. There are very few weeks without appointments.

Father has had 100% care money until now. There have been many deviations, she has vomited due to epilepsy and migraines if she is on the wrong medication, etc., and then they call from the school. One of us must always be prepared to drive to school. We can't even train at the same time, because then we have to put the mobile in the cupboard in the changing room, so we don't dare.

Now, when applying for the renewal/extension of care allowance for father, NAV has concluded that she has supervision during the time the timetable at the school indicates that she has the right to be at school. But it's not like the school follows her to hospital appointments. We have to be there when the school needs us.

We have pretty well documented deviations from the timetable all the time, and it has been accepted every single time. Until now, when there is a central NAV unit that has to interpret the new rules and does not show human judgment and does not look at the deviations either. They write straight out that they do not take that into account and will not give the father the right to be present for his child

So they have from 1.11. set down nursing allowance for 47%. It is justified by graduated care allowances and that she supervises the school at that time, according to the timetable, even if it is not like that on a daily basis, as we have documented. Meetings during the day with the aid apparatus are not taken into account, the decision states.

In practice, this means that he will be paid NOK 8,000 per month. And with my disability benefit, + her small support, we will not be able to cover fixed expenses for housing etc. We have already moved once, from Drøbak to Tønsberg due to housing prices.

My husband will try to find a part-time job locally, but who wants to hire someone in his mid-50s with no education, who says he has to leave work several times a week to accompany children to hospital and go to meetings during working hours, when the child should actually have been at school according to the timetable. Can't imagine he's first in line there.

We have a small care pay from the municipality, they are on me, as he has had 100% care money, with the consequence that NAV deducts around 5000 gross from my social security, so there will be nothing more, you give with the one hand and takes back with the other.

Ida Simonsen

I myself stopped working many years ago because it was not compatible with having one

daughter with severe heart disease. Since she has a chronic illness, I have after the old one

care allowance scheme does not claim care allowance, except for the periods she has been in

admitted to Rikshospitalet for surgery. From the time she was born until she was two and a half years old,

she underwent three major heart operations. The last two in two days, then one

complication led to an acute heart attack and she had to be re-operated. As a two-year-old had

she had heart failure for six months while we waited for surgery. We sat with the responsibility as

nurse, nutrition specialist, physiotherapist, psychologist, case managers and parents.

Throughout each night we checked to see if she was still breathing. On several occasions I was sure

that she had fallen asleep.

With the old arrangement, we were guaranteed the right to be present

when our daughter was going through another heart operation. With the new arrangement, we can see

far beyond that possibility. When she is going through her fourth, fifth, sixth operation, is

most likely the daily account used up. We move back to the time when children did not

were allowed to bring their parents with them to the hospital. It wasn't that long ago. This time

it applies to the weakest children. The chronically and seriously ill who have the greatest need to have

mum and dad with them. Let me put it another way: The weakest children, the toughest

the heroes I know of need us with them.

Kristine Lindhøy

In 2015 we became parents for the first time, just too soon. Our little boy was born 11 weeks before his due date. He needed breathing assistance and was fed through a tube for the first three months of his life. My husband and I received care money continuously.

Just when we thought we were going home with a healthy boy, the unthinkable happened. We are told that he has cancer in both eyes and must immediately start chemotherapy, as he has barely passed his due date. There were a total of 14 chemotherapy treatments and many local treatments with laser and radiation plate. We watched over him, changed Hickman's plasters, gave him immunostimulating shots, kept track of blood test results, were there during blood transfusions, avoided all places with gatherings of people (shops, people's homes, maternity meetings) to keep him healthy. At worst, he was put under anesthesia every two weeks for a period of six months. So far 33 anesthetics. There have been a total of five different hospitals in the picture, we planned travel and coordinated appointments, talked to the doctors, accepted home hospitals and followed up physio appointments, we applied for reimbursement for travel and medication. It was time-consuming, at the same time we were also looking after a small baby who was at times both lethargic and nauseous from all the treatments.

As soon as my son had his immune system back, he started kindergarten, and my husband and I went back to work. Our son is still far from fully recovered, but with anesthetics only every 6 weeks, and only approx. 6 follow-up hours by the pediatric oncologist and the hearing department over the course of a year, it is entirely possible for us to work. However, it sometimes happens that we still have to be at home with him before eye examinations and anesthetic treatment, to make sure that he is well enough for the anaesthetics. Although it is stable now, we still have unstable periods.

One of my biggest worries today is that he will get another cancer as well. His disease is accompanied by an increased risk of other types of cancer, approx. 40 %. Eye cancer is one thing, it has a survival rate of 98 %, but these other cancers are far worse, with poorer prognoses. We are going to use up our care money in six months, probably sooner, because we have already started to use the new quota from 1 October this year.

My son has been in hospital for a year and a half in total. We managed, we have the world's happiest and happiest boy, but what would have happened if he got sick today with the new arrangement? Then we would have reduced our income by approx. NOK 400,000 in these two years. The added burden of financial worry on top of whether he survives I don't know if I could have coped. Presumably I had been called out sick. It is difficult to live in such an uncertain environment, with the unpredictability that a cancer diagnosis brings.

In conclusion, I would like to mention one thing; I worked more than I ever did these two years when my son was at his worst. We keep our children healthier for longer and save their lives in certain situations, we reduce hospitalizations and ensure better mental health for our children. We cannot be replaced in these situations. It is not realistic that we should return to working life when we are in the middle of such crises. There is nothing more we want than a healthy child and a normal (working) life. I want the effort we parents make to be rewarded and appreciated! We save society from large additional costs. The new scheme hits the most vulnerable group unreasonably hard!

Helsing Aina N. Thorkildsen, mother of 2-year-old Torvald, who has cancer

On 15 March 2017, our 10-year-old son was diagnosed with cancer (Wilm's tumor) in both kidneys. After 2 months of many hospital stays and various chemotherapy treatments that did not work, the cancer tumors were operated on. Both kidneys had to be removed, and our son became dependent on daily dialysis. On 23 August we were finally able to come home after 129 days in hospital.

We both received 100% care money according to the old arrangement. This decision expires on 31 December.

Our situation is temporary. Chemotherapy is planned to end by Christmas and dialysis in about 1 year, when the little body has been cancer-free long enough to be able to undergo a kidney transplant. We know that our son will need continuous supervision day and night for over a year to come. For several periods, he will need both his parents with him. We do not see that we can afford for both parents to be at home with 100% coverage during these periods, because we have to postpone the 260 days of 100% coverage until the planned transplant. With the new arrangement, this means that one of us will have to take unpaid leave from work at times. If the transplant has to be postponed, so that the 260 days are used up, the other parent will also suffer a loss of income, this at 34%. This will be dramatic for the family economy. In addition, there is the concern about cancer recurrence and complications surrounding the dialysis and the transplant and what financial situation we will then find ourselves in. We experience this arrangement as at least as unpredictable as illness!

Had the new scheme already come into force when this tragedy struck our family, our quota of 100% coverage would have been used up about 2 months ago. In other words, we would already have had an income loss of 34%.

Then we were in the same situation as we are still in, where the days go by for hospital visits with blood sampling, injections, blood pressure measurement, chemotherapy, dialysis treatment, ordering aids, fluid accounting, medication, tube feeding, wound care, washing after daily vomiting, telephone calls and meetings with doctors, nurses, physiotherapists and municipal employees. In addition, there are the usual care tasks. At this time, we did not have the surplus or energy to think about working in addition. We still don't have that, but due to finances, at least one of us has to go to work already from 1 January.

We are being pressured to balance our son's best interests against the family's finances and we have no idea how this will go.

Regards, Stine Marie Holm and Magnus Holm

Dear Anniken,

I am the father of a one-year-old with acute myelogenous leukemia (AML). It is such a serious and aggressive form of cancer that it is absolutely necessary for both parents to receive 100% care money during the entire treatment period, and the convalescence period after the end of treatment. We are talking about 8-10 months of round-the-clock care and being with a child you don't know if you can celebrate the next birthday with. We are thus in the group that will be affected first by the reduction to 66% support.

I saw you in the Storting's Question Time today (8 November). It was anything but reassuring. You gave exactly the same answer to all the questioners in the care allowance case, but you failed to answer the actual question they asked - every time. The way you meet the criticism and the questions is INCREDIBLY arrogant and also shows a very lack (if any) of understanding of what you have actually had agreed to. In addition to failing to give real answers to the actual questions, you promote untruths about both the new and the old system - on the floor of the Storting. Drop the rhetoric from the communications advisors and start listening to what the voters who are affected by your decision actually say! It is human to make mistakes and there is no shame in turning around.

I am proud that our child got cancer in May and not in October. Had the new scheme come into force on 1 May, our last day of 100% care money would have been next Friday (17 November). Now we are hospitalized with a serious infection, which is a common side effect of the rarely aggressive and powerful chemotherapy. Mortality among AML patients is noticeably higher than among patients with the other form of acute leukemia (ALL). However, most AML deaths are not due to the cancer, but to the infections that strike when the immune system is so weak that the patient gets sick from his own bacteria; bacteria that are found naturally in the body. We have been hospitalized for 3-4 weeks with such life-threatening infections at least once a month since May. The number of nights we've been able to sleep at home as a family is about 30. And next week, the worst nightmare of our lives would get even worse:

For the rest of the year and the first part of next year, we would receive far less money than before (34% cut to each parent). With a personal finance budget cut of 34% from not just one, but both of our incomes after just a few months, our family would have gone bankrupt. We would probably have to sell the house. Our second daughter would have been torn out of her safe and familiar everyday life and had to say goodbye to friends, nursery school and good neighbours. We would not have been able to buy anything new with such a dramatic drop in income and would have been forced out of a housing market we have fought hard to enter. Because in our case it is about 3-6 months with this pay cut would we probably did everything to avoid ending up outside the housing market and tearing up the safe home life for both our children. It could quickly have led to us taking on expensive, short-term credit debt to fight through the cut in income. It doesn't take much knowledge of such lending schemes to understand that it would hang on to our family finances for many, many years. And these are just SOME of the consequences of the new arrangement that would affect us. And if the scheme had been adopted in May, this would have taken place at the end of next week.

And all this we would have to deal with on top of the worries for our seriously ill child. It is probably not possible to explain to you what it is like to live with those worries.

But, I want to ask you a couple of questions, Anniken, and I hope you are able to listen to what I have said and reflect on it, before you answer what I am actually asking you: Have you had to think realistically about perhaps arranging the funeral of your daughter or son as a result of serious illness? Would you choose to leave your terminally ill child with municipally employed nurses who do not know your child, and rather go to work to compensate for the large loss of income, inflicted on you by the state to which you have paid plenty of taxes throughout a 20-year long career life? I can also add that if we parents don't

had been present at the hospital, our daughter would have received the wrong chemotherapy regimen and received far too high a dose of a chemotherapy drug that causes heart failure in excessive doses. We discovered the error and after telling 4 different nurses over two days, the error was also discovered by them - thanks to us. Not thanks to the 4 different shifts we told. How do you think you would have handled that when you knew at the same time that it was a few months until your family lost a large part of their income base, and you didn't know if or when that funeral might have to be carried out?

Fortunately, we don't have to plan a funeral after all. But the fact that our child has been sick now does not mean that he will never be sick again. And if that were to happen, the scheme you brag about would no longer catch us or take care of us, and the state would inflict our worst nightmare - in the middle of our worst nightmare.

After seeing you in question time, I don't know if you care about us and everyone else you hit with the new care allowance scheme. But IF you care, it's easy to show it to all of us it applies or will apply:

1. Listen! 2. Think. 3. Turn!!

Mvh, Erlend Ryvold Ski Father of a one-year-old with AML

Care allowance based on 100% wage income, with the recipient, is a cheap expense for the State, and life-saving for the recipients, who face a very demanding/stressful everyday life.

If the new rules for care allowance remain in place, it will be very costly for the State in both the short and long term. It is not sufficient to pay an employee in a position of 37.5 hours/week, whose parents/relatives are forced into work. Think of all the money the State saves on parents/relatives taking the job, rather than a 3-part 24-hour shift with weekend guards and health personnel.

Our history:
We receive care allowance per dd..
Our child has a very severe degree of the disease ME.

The child needs round-the-clock supervision and care, at home. Pain, nausea/vomiting, problems with the intake of nutrition/special diets, personal care and arrangements, occur around the clock. Our situation has been like this for the last 3 years.

A 100% position is considered a 37.5 h/working week for 5 days. That is what we are paid, according to the old rules for care allowance. All the remaining hours of the day, we work for free.

What will it cost the State, if we parents go out to work, and the healthcare system has to come in to do our job? Then two full positions will not do.

With the loss of 100% salary for receiving care allowance, which extends over 1 year, most people have major problems with personal finances, in addition to the enormous burden, it is for everyone in a family, who is affected.

One does not need to be a rocket scientist to be able to see that the new care allowance rules will cost the State much more money, with a reduction in payment after 1 year, and lead to major problems for the recipients.

So listen to those who know this firsthand, every day!

This is something that can suddenly hit the everyman, and it is NOT an area to "save" money on!

Mvh, Parents of a child with severe ME disease

My daughter has an incurable serious progressive disease INAD. She has already lost the ability to walk, stand, crawl, sit, eat, talk, see and move. She is 100% in need of round-the-clock care. As the disease progresses, vital organs such as the lungs, heart and brain are next in line. She will need machines to breathe. This is a huge strain on me mentally and physically. I am alone in the care and have time and again been refused by the municipality for help for my daughter. I have not had the energy to apply for Carer's Allowance because there is very little likelihood that I will be granted it. I have assistance allowance, transition allowance and care money, this is just enough for the expenses we have today. Kindergarten, rent, electricity and food. If I lose care allowance or go down to 66% salary, there is no good benefit or care pay that will take over. We risk being left without a place to live and food on the table, while my daughter continues to deteriorate. What are our options?

Siri, worried mother

In 2013 I became the mother of twins, Tora and Troy. They were born in week 29 of the pregnancy, and both have chronic diseases. Troy has cerebral palsy, while Tora has a congenital heart defect. Both have struggled with low immune systems. We were in hospital with them for 108 days after they were born. After this, they have had countless hospitalizations, and nursing allowance was the solution until the children were approaching two years old. The maximum limit of 1,300 days of care money would have been used up fairly quickly. If it hadn't been for me being on sick leave, I don't know how we would have coped. I was "lucky" to get inflammation in my hips during the period in which we received care allowance, which eventually led to me being on sick leave and receiving sickness allowance. At that time, we had "used up" our right to care allowance. Now I get unemployment benefits until I am declared healthy. Unfortunately, this money does not give you a new right to care allowance.

Having the financial burden hanging over them, in addition to having sick children, is a concern I would like to be without. If I had the opportunity, I would be back at work. The arrangement as it appears seems poorly thought out, and several groups fall through the cracks. I don't think those who created this scheme understand what it's like for parents who have sick children around the clock. There are so many families who are in this situation, and many who have it so much worse than us. Having to fight to keep house and home, at the same time as many parents are fighting the battle of their lives together with their loved ones in intensive care, should have been unnecessary. The parents of these sick children are a huge resource, and they should be recognized for the work they do. You should not risk going bankrupt because you take care of your children.

Monica Tangen

To Anniken Hauglie

My husband and I are the parents of two children, a five-year-old girl and a two-year-old boy. Our son, Erik, was diagnosed with retinoblastoma (eye cancer), cerebral palsy and childhood asthma in the course of a few months this winter. He thus has one serious and potentially life-threatening illness, which will go away with treatment, and one non-life-threatening but permanent illness. Fortunately, he is relatively mildly affected by both diseases and is an active, quick and fun-loving boy. He still gets tired faster than other children of the same age, and breaks must be included during the day if he is in the nursery. He wears an eye patch 7-8 hours every day on the healthy eye to train the diseased eye, where he has 25 % vision. In addition, he uses leg braces due to spasticity in his calves. The childhood asthma, which is initially a trifle in the whole thing, is now causing the most trouble. He catches all the world's colds as soon as he arrives at the nursery, and becomes very short of breath. Then he has to be home from kindergarten, and it usually takes a couple of weeks before he is in proper shape again. This might not have been such a big problem if he hadn't had to go under anesthesia approx. every four weeks to get an examination and treatment for his eye cancer. If he is short of breath, he cannot be anaesthetised. The treatment is done in Switzerland, as OUS could not offer the treatment Erik needed, and therefore has an agreement with a hospital in Lausanne, so it is not so good to go on toll trips either. In the end, there will not be many days in the nursery. We have been completely dependent on care money to make ends meet, and have been eternally grateful for the arrangement we have had. Both of us parents had at the start, during the most treatment-intensive period with chemotherapy, 100 % care allowance, and we now have 60 % care allowance each and work 40 %. We cannot get more time at work, if there is to be the slightest hint of predictability for our employers. The time for the next examination and treatment is determined from time to time depending on the result after the previous treatment. Sometimes only ten days pass between journeys, other times five weeks. It is therefore very difficult for our employers to schedule us into normal operation. Before 2017 is over, we will have been to Switzerland 14 times.

If the new scheme had existed when our son fell ill, the 260 days of 100 % income would have already been used up, and we would only have had 66 % of our previous income to go with. It would not have been so good, as our expenses are even greater than before. Despite good arrangements in Norway so far, there are always things that are not covered. It is very stressful to think that we could end up in that situation if Erik does not hurry up to get well, which is not very likely.

This is what gives us a personal commitment to this matter, but our family is still not among those who will be hardest hit by the new scheme, as our son will in all likelihood recover from at least one of the diseases. Unfortunately, this does not apply to all families.

Sincerely, Elisabeth and Mattias Huneide

After a tough but normal pregnancy, William had a serious, acute and traumatic birth. Where he came out black and lifeless. With them sewing me, it was life and death in the neonatal intensive care unit.... No one knew anything about William's condition. After 5 weeks in the neonatal intensive care unit, a serious and rare muscle disease, Nemalin Myopathy, was confirmed. There is very little information about the disease, and what they knew was that the sickest people with that day nose did not survive the first year. William did.

But when William was 6 weeks old, he suddenly became very ill one evening. They ran with him to the children's intensive care unit and thought they had stabilized him, so at 05.00 the child's father and I were told to go to bed.

The next day, the doctor came and told us that both lungs collapsed shortly after we left, and that they had to revive William for a long time, and they all thought they were going to lose him that day.

In the morning we met a boy with a respirator in his nose...
After a couple of weeks, and a few more attempts to extubate him, he was free from the tube in his nose.

We stayed at Ullevål hospital for 4.5 months. about 4 months at a medical children's post, where we parents were supposed to try to live as normally as possible. We eventually moved home with a seriously ill child, who needed continuous round-the-clock supervision. With only night guards from the municipality. Both me and the child's father went on childcare allowance at the same time! Then W had CPAP as a breathing aid during sleep, and during tube feeding to avoid vomiting as much as possible.

William had great problems with getting food in, via nasal tube (As the anesthesiologists did not dare to put him under anesthesia due to his condition to do the PEG). He gulped/spitted after every single meal and we had to save his life at least 10 times a week, and had the ambulance at the door almost every week. W's muscles were too weak to get the swallow up and we had to suck William far down his throat to get it out.

I slept an average of 1-3 hours per day as he often needed me at night, even if a night watchman was present.

Only after William was 10 months old did we get some day relief in the form of a few hours of personal assistants, while the father started a 100% job.

When William turned 1, a whole year, we celebrated it in the children's intensive care unit after the anesthetists finally dared to put him under anesthesia and then operate the PEG and the Santa's plastic to get rid of the vomiting. It felt like a new life!

But the anxiety for my kid was far from gone. Mucus plugs in the throat/pharynx were still everyday for us and they clogged the small pharynx often and irregularly.

Then the cough machine came into our lives, which was another security on the road, which could save his life from mucus plugging.

At the same time that things were getting a little better, William's lungs started to work against the cpap and had to change this to BIPAP, which was a tough transition for William. His pcO2 started to rise and that was not a good sign.

After a while, the bipap was set to the highest pressures a child can have, but W was unable to cooperate with the machine and got more air down into his stomach than into his lungs. When W was about 1.5 years old, this started to affect William with poor satiety during sleep, and I had to sit and sleep with him on my lap before having a position that managed to make satiety as good as possible. In the end, the pcO2 was so high that we knew what awaited us. William was on the verge of a general anesthesia and slept almost the whole time, and the doctors had to break his fingers to see if he reacted to pain.

Finally, one day, I made the decision that my boy should operate a hole in his throat to get free airways with the air he needed from a ventilator.

This was something that not everyone completely agreed with me about, and they all told me the disadvantages of a hole in the throat, such as William's sounds would disappear, he might never accept a cannula in his throat, etc. But the other choice we had was DEATH! Something that for me was completely out of the question. As the boy had fought hard to be in life here with us, he should at least get that chance.

It's the best choice I've ever made. A boy woke up, after the anaesthetic, with blood all over his neck, but without a mask on his face, which had been on 24/7 for the past six months, breathing with the machine and where the doctors had to lower the pressure as the hour went by.

The sounds returned after a day, and after that he hasn't stopped chattering, in his own way.

The doctors were so pleased with the result and this was really going to be a new life for my son.

BUT, with a hole in the throat, and a respirator connected around the clock, every single person understands that there are many risks involved... The needle can get out, it can become clogged with mucus plugs and the respirator can break, which then becomes completely life-changing .

In other words, he must be carefully looked after every minute of the day.

In everything I'm telling you about now, I've had care money, today he's 6 years old and has become a schoolboy.... SCHOOL BOY??? from the terminally ill little baby no one believed. William must have incredibly weak muscles, but is strong like a lion inside!

The fact that I have had care money has been absolutely decisive for this child being alive today, and having a dignified life, on the same level as healthy children. I have been there for him around the clock....for 6 years. And I have done it with pleasure, even with a "salary" from 2011.

I have had to be a pulmonologist and learn advanced medical procedures both with William and all his devices. I have had to be his nutritionist, his physiotherapist, his special education teacher, his social worker, and every other possible professional thing a mum has to do with a sick child.

In addition, I have had to be his voice to those who do not understand his sounds, his arms, his legs and then mom at that.

Has he had an easy life? not at all. Has he had many tough, painful and critical situations? YES, He obviously needed his mother's comfort and ONLY me is the one who managed to comfort a sick little boy. Does he have a wonderful life? Yes he has, and I dare say it's thanks to me!

I have done everything for him, around the clock. I have made sure that those around him are properly educated and trained to be safe for him.

Without childcare money for me, he would never have experienced his 6th birthday, never experienced the first day of school and that and few classmates who love him, and whom he loves. He would never have experienced being sent to the hallway by his teacher because he is not quiet during lessons.

I have done so much more than anyone in the world demands of a mother, and I would have liked a pat on the back for the work I do every single day, instead of having to fight the system to survive financially.

Here we have a boy, who belongs to these 50 families in Norway, who ends up outside. Who is seriously and permanently ill and who can at any moment end up in a life-and-death situation in a matter of seconds.

Care pay? I can only forget that, because my district thinks it knows that I have enough relief in the form of assistants that it is not relevant. What the district, hub and apparently the politicians forget is that this boy needs two adults by his side around the clock, every hour, every minute. And he doesn't have assistants for that. In addition, he involves 3 adults in many different situations, where I always have to be number 3, even if there are tasks that are far from a mother's role. For the past three years I have been a single mother to William.

That I always have to be more than just a mother is something I have accepted (in addition to a 4-year-old daughter) But I think that it is not much to demand that the system allows it, and I want to do the best possible for me and my family .

Elin Gunnarsson

Our son is developmentally disabled and also has many disabilities. We have had care money several times. The last time was a few months before he turned 18. At that time he was very seriously ill due to an operation and both of us parents had nursing allowance at the same time

some months. If it had been according to the new regulations and he had been 4-5 months older than he was, both of us parents would have lost our entire income for a few months. This year he has moved into his own home (he is now 22 years old) as one of the lucky developmentally disabled people who could afford it at such a YOUNG age? age. And how did he afford to buy his own home? Subsidy from us parents who had to take out loans, loans from

The Housing Bank, (rejection of grants from the Housing Bank because our small municipality did not receive an establishment grant from the Housing Bank for redistribution) and all saved disability benefits. ALL disabled young people who were not part of the transition scheme for housing benefit receive absolutely nothing in housing benefit, regardless of how big their housing costs are.

As a result, almost all disabled young people who need housing must wait for the municipalities to find the funds to build homes or housing associations for them. That doesn't happen when most people are 18.

Who looks after them in the meantime? It is of course the parents who are now not entitled to childcare allowance. They are also not entitled to care allowance (sick child days).

The minister has used the fact that the child has disability benefits as an argument for depriving parents with developmentally disabled children over 18 of the right to childcare allowance. Our son would use 8-9 months of his disability benefits to cover our lost earnings just for this one care allowance period.

Mvh Kari and Vidar Giske

We had twins in September 2016. They arrived 10 weeks before their due date and were very small. One twin was in the hospital for 3 1/2 months before he was allowed to come home, with various
apparatus. Fortunately, both mum Connie and dad Simen received care money for the entire stay to be able to look after and follow up the boys. At the same time as we somehow managed to give our eldest son of 1.5 years (now 2.5 years) a relatively normal everyday life.

Unfortunately, our "caregiver child", Sander, is still so ill that he needs round-the-clock supervision. Dad had childcare allowance Sept 16-Oct 17 in 100% to help at home, while mum took over from Nov 17. Now on the NEW scheme!

We went from worrying only about Sander's health and development, or rather the absence of it, to worrying about how we will be able to pay house and home in 260 days. We have no idea when Sander will recover, since no one can tell us what his diagnosis is, and he therefore has an unknown prognosis. He receives weekly follow-up from several hospitals.

The only thing we know for sure is that a reduction in income will probably send one of us straight into the sickness absence statistics due to stress..

Mum Connie and dad Simen.

Boy, now 5 years old, was diagnosed with a brain tumor when he was 8 months old. He was then operated on for this. Due to progression in the residual tumor, he was reported 3 times until he started on

chemotherapy in June last year. My father and I have been at home for periods, but have worked when there has been an opportunity. The previous arrangement worked well for us and gave us financial security which has meant that we have been able to live "as usual" and we have been able to be the security our boy and older brother have needed.

Our boy has now finished chemotherapy for this time, but lives with residual tumour. He is to be reintegrated into kindergarten, and this should be done at a leisurely pace with the recommendation of paediatricians and a neuropsychologist. We are faced with a dilemma now that he is going out in bras again. Because we have to choose between taking the child's best interests into account (which would be a quiet start, with short days), and thus using up the care allowance days. Or place him in nursery school, work and save the care allowance days. The choice should be easy, we should be able to choose the child's best interests. But we know that there will be times when he will again have to have chemotherapy, or radiation, or surgery, and then he will need us. We should drop this election!

Etc, Susanne

Dear Anniken

I would like to preface this letter with all kindness by arresting you for a statement during question time in the Storting on 08.11.2017; It is absolutely NOT too early to say that the change to the care allowance scheme will have dramatic consequences! I would very much like to help you better understand this by sharing our story.

We are lucky enough to be the parents of two wonderful children, one who qualifies for children's insurance and one who receives rejection after rejection, which no insurance company dares to take the chance of having on their register. Our son was born with a very rare syndrome which gives him a number of extra challenges in this life and which means that the whole family has to stand upright day after day in the headwinds that storm against them. Our two-year-old son has three heart defects, is being investigated for hydrocephalus, poor vision, major nutritional difficulties with PEG, poor immune system, continuous nail root infections, frequent respiratory infections, hypotony (which makes every visit to the toilet a nightmare as this unfortunately also applies to the bowels), throws up often up around 20 times a day, need continuous supervision as there is a high probability of aspiration of the stomach contents and bad teeth due to all this stomach acid they are exposed to... yes, the list is long of reasons why we did not send a message from the mother that "everything is fine to with mother and child".

If our son had been born after this new care allowance scheme had come into effect, we would have had an income of 66% three months ago. We start to "eat" the precious daily quota as early as 01/01/2018 and the days fly by as he is in and out of hospital a lot and is still too weak to go to nursery school. Fortunately, he will grow stronger with time, but we still don't know how long this will take. With the new care allowance scheme that has been passed it seems the government has given him a deadline, so let's hope he gets well soon!

He has to stay healthy because we have to have money to live and to be able to live in the new

our home. This home we bought to make room for all his equipment and to finally make room for our sister's dollhouse, which until now has had to give way and stay with the grandparents. We bought this house before we had any idea that this scheme would be adopted, and the time that should have been filled with expectations and joy is now filled with uncertainty and worries. These are about the only worries we didn't have before 01/10/2017 that can compare to the worries of having a sick child. We run the risk that the whole family will have to live in financial incapacity for a long time to come.

You must have made it clear to yourself which group in society is hit hardest by this scheme. It is relatives of sick children who often sit with high loans and low earned pensions. It would be out of the question for me to turn my back on my sick child who needs me the most in order to earn some money. Thus, I am forced into "unemployment" with a working 300% position which should also receive a night supplement without even earning pension points. This falls on its own unreasonableness.

You also don't have to fear that parents of sick children will get too used to staying at home. They become working iron!! There is nothing I would rather see than to see my healthy son one day waving "hate" at me when I walk out the gate of the nursery to go to work. I have never wanted more in working life. I have a degree in civil engineering, but spend every spare second after he goes to bed at night on a course that gives me the opportunity to work in the teaching sector, which gives increased flexibility and is better compatible with the challenges we will have to live with as parents to a disabled child. But surely it would have been better to sink into the sofa and pat yourself on the back after today's hard work.

We now choose to take one day at a time and not think too much about what the future may bring in order to sleep better at night. So then I ask you, dear Anniken: Reevaluate this care allowance scheme and remember "It knows best where the shoe presses, who wears it".

Greetings mother with greater joys, deeper sorrows and from 01.10.17 many more worries

Every year with our children is different. In the last year, we have been in and out of hospital together

our daughter and with several periods of illness in between with quite a lot of absence from work which

result. At the hospital last week we spoke to the doctor about the instability and the absence and we

discussed whether care allowance could be an option, but we agreed that we are not applying now

as she is not so ill that it is a matter of life and we dare not use up days if

the scheme does not change. We may need them in worse times...

Nina Løkkemyhr Elsayed

On the first day of school in 2016, we received a phone call that changed our entire lives. My 10-year-old son had been diagnosed with Sarcoma (a rare type of cancer). We were told that he had to go through a tough chemotherapy course for almost 1 year (18 chemotherapy courses).

6 courses were to be taken before surgery, but in my son's case the tumor was so bad that he had to amputate the leg. From going from an active boy who loves basketball, skateboarding etc. to having to amputate his leg was incredibly difficult both for Han, his siblings and us parents who had to watch everything our beautiful tough boy had to go through. Two weeks after the amputation, it was on again with new cures. In between the cures, there was zero immunity, so we kept cleaning the house to try to avoid hospital admissions, nausea, stomach problems, exhaustion, blood tests, blood transfusions, severe phantom pains. Pain that could not be controlled at home, so it was back to the hospital. At the same time that he was now in a wheelchair and needed help with absolutely everything.

We were "lucky" we at least had the opportunity to be two on childcare allowance this year without thinking about daily accounts. First 100 % to manage this together and we needed that to master this for our son and for our siblings and ourselves. After a few months, we had 80 % care money for the rest of the year. We wanted to work but couldn't bear it and didn't have the opportunity to work more between all the roofs.

Our son finished his treatment in August 2017.

We were incredibly happy and had great hopes for the future. This hope did not last long. On the 1st day of school in 2017, we were told that he had spread to the lungs and 4 places in the skeleton. Our world was once again shattered and even worse now. The chances of Sarcoma spreading are not good, the body can no longer tolerate chemotherapy and there is no medicine that takes away the cancer. We were again put on 100 % care money. What other possibilities are there? You are unable to work, you don't sleep, you don't eat and in addition you try to keep going for our sick son and his siblings.

This time on care allowance is both much worse because of our son's health but also because of our concerns about the changes to care allowance. We have already come under the new rule and in half a year we will lose almost a full income. We have no idea how our everyday life will be in the future, but what we do know is that we cannot keep the house if we lose the one income. The extra concern this gives makes us even more tired in an already incredibly difficult situation and it makes it even more difficult to work. We are both out of childcare allowance and hope to be able to work for good periods. We both have a job that we love.

When our son got sick he had a big worry: how much do all these treatments cost and how are we going to get money when we don't work. We told him that he should not worry about this and that we lived in an incredibly nice country that took care of us in such tough situations.

We are now trying not to talk about the changes to childcare allowance when he is around, so at least he will be free of an extra worry. Please let us with seriously ill children have the security of 100 % salary. Let our children and us parents release this extra burden of trying to figure out how to be with our seriously ill child.

Among other things, the mother of an 11-year-old with cancer

Hello

My child was born deaf. Since she was born, we have been and are still under investigation for epilepsy, reflux, autism and major sleep difficulties. (she wakes up every 20 minutes at night and only sleeps with me (mother) next to her) since the stress level in the body increases and the epilepsy attacks are back, she is simply unable to develop as normally as other children her age. The result of this is that I have to stay at home with her, because she only accepts me in everyday life and is carried to sleep and everything else. Since we are also in and out of the hospital for blood tests because muscle values are fortunately high without doctors knowing the reason for this. We are on a lot of courses since she is deaf, we have to learn a completely new language "sign language". Countless blood tests that have simply traumatized her because we had to hold her down with all our might for 10 minutes to get another prick for a blood test, operations that have affected a small body.

I have no right to care allowance because I was/am a student and I cannot continue with this and am therefore without income, we applied for care allowance 9 months ago and still have not received a response, if we are refused, we have to sell the house and all because we can no longer live on an income of less than NOK 25,000. Moving to an apartment will actually be even more expensive for us than a house. So we don't know what the future will hold, what diagnosis we will finally get for her and whether we can continue to live and live in this house that she is used to and thrives on.

Anonymous

We are one of these families who have fought a year-long battle against the system.

Our son Bjørnar is now 13 years old. He has a number of diagnoses and conditions. Bjørnar was born as a twin, but his brother died at birth.

In the early years he was close to death many, many times. He had (and has) a very complex condition where he stopped breathing up to 20 times a day. Then he had to be revived.

In the first years, we were more or less constantly at the hospital. He was almost 1 1/2 years in the hospital before we could take him home. Then we had built a new extension where he could be with us and nurses. We still spent most of the time at UNN. There was a lot of blue light in the early years. One pneumonia after another..+ many serious incidents.

Bjørnar has undergone 30-40 operations and already in January he will undergo another complicated operation.

Respirator, oxygen, distended intestine, epilepsy, cerebral palsy (grade 5), mic, lung disease and deafblindness are what he has received. It is not a small thing to keep track of. He is monitored 24/7.

According to his doctor and many other health professionals, it is thanks to us parents that Bjørnar has managed. We have stood by his side all these years, thanks to care money. Both his dad

Per Gunnar and I received care allowance for 9 years, 100%. Per Gunnar has been as active and participating as I have been and we have worked as a team all these years.

When Bjørnar was 9 years old, the child care money ran out and we were completely despondent. After much back and forth over a long time, we started with BPA. After long, hard negotiations with the municipality, I was allowed to stand as an assistant in the scheme. This has saved us.

Let me be perfectly clear. For the first 9 years, we could NOT have managed without care money. It was absolutely crucial for us to be able to have Bjørnar living at home and for us to be able to keep the whole family together. Bjørnar has 3 siblings. If we didn't have care money, it wouldn't have been possible to survive as a family. His 3 siblings have today completed their education and are currently in education. In addition, they work alongside their studies. They give back to society as much as possible. They have done well, but that is not a given. Siblings of sick children are also not heard in this case.

There are several things about us on the internet, for example Knut Arild Hareide visited us in 2013. We have also had a visit from Krf's deputy chairman Kjell Ingolf Ropstad. He has also taken up our (sick children's) case in the Storting's Question Time. In addition, I have been in a meeting with the then spokesperson for the Labor and Social Committee, Bente Stein Mathisen. I have, as best I can, worked on this case for many years. Unfortunately, the outcome of the new law was the worst imaginable for our seriously ill children.

I'm dull. Where has the common sense of our politicians gone? Was human dignity forgotten by? It's children we're talking about!

When I now see the case of the boy who was offered a place in a nursing home, I just get sad. We were in exactly the same situation when Bjørnar was approx. 2 years. Fortunately, they understood after a relatively short time that we would never accept it.

Rigmor Pettersen

Malvin Lien Pedersen was born on 30/06/13, apparently healthy. When Malvin was 3 months old, we discovered that something was wrong. After this he has become increasingly ill.

Malvin is very seriously affected by Epilepsy, which has gradually led to him becoming multi-disabled. He gets sicker and sicker as time goes on. He can no longer walk, sit, talk, eat, hold his head up. The whole body is limp without muscles, totally dependent on aids that have significant support systems. Need help with absolutely everything.

He gives no expression of joy, smiles and laughter, it has become completely absent in the last year.

He has early-onset epileptic encephalopathy (EIEE) and early myoclonic epileptic encephalopathy (EMEE), with a very worrying prognosis. A large number of medicines and forms of treatment have been tried, without success. Repeated admissions both at SSE in Bærum and ST.Olavs in Trondheim.

Malvin's Epilepsy indicates that he will most likely not have a long life.

EEG tests show that Malvin has constant high-voltage epileptic activity in his head. He has up to 25 violent seizures a day, constant body twitches and an unknown number of seizures that we cannot see. Malvin often vomits after seizures, on average 4-5 times a day. At most, it is up to 10 times a day. He also vomits when we have not registered any seizures beforehand. Often after a seizure, he empties himself with urine, which causes him to pee through his nappy several times a day.

Malvin needs supervision 24 hours a day so that life-threatening situations do not arise. There have been 2 episodes where he has not been under supervision for a short period of time, where he has vomited and been dangerously close to choking on his own vomit. He often has to be put down on his side after/during vomiting, and he has to be helped through the situation. After every time he vomits, both his mouth and nose must be cleaned of vomit.

Malvin does not eat itself through the mouth, which makes it time-consuming. Swallowing and chewing reflexes are very poor. Life-threatening situations can occur if food is given by mouth, this has happened. Food gets stuck in the throat. All medicines and nutrition are given through a button in the stomach. This must be changed every 3 months, which is carried out by the father. Hoses and syringes used must be regularly replaced, new syringes must be used if medication is given several times a day. As Malvin vomits several times a day, more food must be added in addition to normal meals. Meals, amount of food, weight check must be planned through a nutritionist.

Malvin's bowels are not working, so on the second day we have to use an enema, so that he can empty his bowels.

Machines with clothes, blankets, bedding and duvets are washed daily due to vomiting and urinating. Car, car seat, wheelchair, mattress, carpets or sofa must be cleaned several times a week with a cleaning machine and dismantled due to urine and vomit. Mattresses, duvets and aids are sometimes thrown away, because odors and stains. Several types of nappies have been tried, without success. Toads are widely consumed.

Malvin has no circadian rhythm, it happens that he is awake several days in a row. Awake nights are mostly throughout the week. Often there is loud screaming both night and day, which wakes up our 2 other children.

Malvin must be shielded as best as possible from other sick children and adults. A cold can be life-threatening. In week 41 of 2016, Malvin was admitted to ST. Olav on a respirator, which was then with an uncertain outcome.

Malvin must regularly use a breathing machine/nebulizer to open the airways and loosen mucus formations, so that he can breathe.

A great deal of time is spent on doctor's checks, hospital visits, checks, responsibility group meetings, physiotherapist, occupational therapist and applications to Nav, obtaining medicines, aids, equipment to help with feeding (syringes, tubes, button) food/nutrition.

Malvin must be carried when he has to be moved from bed, bath, car, between floors, changing nappies, changing clothes, vomiting after seizures, wheelchair. This is physically demanding when he is not holding any body parts, and it has to happen both day and night.

Malvin must be massaged, stretched and bent several times a day, to prevent stiff muscles and deformities. We can no longer wear shoes, then he expresses pain with loud screaming. In order for him not to end up in a distant state, he must receive attention with sound or touch all the time.

To be the parents of such a sick child, who has a negative development in the disease picture, and who is in such extensive need of care. Is very tough both physically and mentally. As parents, we are constantly tired, lack of sleep and depressed. We must be constantly on guard both day and night, to avoid life-threatening situations arising.

We never have a full night's sleep, Malvin has to be monitored with a camera and sound, and we are in for him several times during the night because seizure. We often have to wash bed linen in the middle of the night, after he has vomited after a seizure.

Malvin has to be carried when he is to be moved, physically it is a heavy task, as Malvin is so weak in his body. As parents, we often know that this puts strain on our backs.

Our social life has faced major challenges. In public areas (store, etc.), other people look and point, people who pull away, and people who react with emotional outbursts when they see him having a seizure. We have lost our circle of friends, and it has become rare for us to have visits from friends. We have been significantly locked in the home.

The hardest thing about Malvin is the psychological part that we as parents experience. Look at our son who is becoming increasingly ill and losing his abilities, often do not get in touch with him, see no joy or smile. Observe that he has severe seizures throughout the day, where he becomes completely rigid and shakes, turns blue in the face, marbling in the skin, eyes that go in all directions and disappear into the eyelids. Look at our little son who has such a bad life. Walk with the fear of death, fear that he will not be alive when we go to pick him up in the morning, or when we go to check on him when he is sleeping.
If mother loses the childcare allowance for Malvin, how will we cope and survive... the consequences are big...

Sincerely, Raymond Lien Pedersen (Father of Malvin)

I have 3 children. Everyone is chronically ill. 2 of them have serious lung disease. Elder Ailo came into the world in 2011. A short week in the neonatal intensive care unit due to an infection, but otherwise healthy and fine. Some cried and vomited for the first six months, then 1-2 ear infections a month and then it escalated. He probably has gastroparesis (paralysis of the stomach/intestinal wall), as well as reflux, chronic constipation, laryngomalacia ("soft" larynx), sleep apnea, migraines and a couple of minor problems. This year alone he has been on the operating table 3 times. Ailo is admittedly much healthier than his siblings, but still needs his parents when he is in hospital.

When I became pregnant with Max in early 2012, I just knew there were going to be complications. I had a sick feeling in my stomach the whole pregnancy and, of course, I went into labor at week 24. They

talked about flying me from Stavanger to Haukeland, he did a caesarean section, stuffed me with drips and blood thinners, wanted to wait, etc. After weeks of bed rest, he came to the emergency room in week 29. It was a tough few months in the hospital and in the neonatal intensive care unit, and it continued When we came home. He had so many gasps I lost count. He turned all purple, blue and gray and had to be beaten to life – literally – over and over again.

He started throwing up all the food and eventually stopped eating altogether. He was so malnourished in the end that he laid down everywhere because he had no energy to play. A 2-year-old must play all the time. The nasal tube was put back in place and eventually he got a gastrostomy (button on the stomach).

He was constantly sick, tired and tired. Just viruses, they said. Open return to the hospital. There were many admissions, usually two each month. The need for respiratory support increased. More frequent, longer and worse each time. We were provided with oxygen concentrator and portable oxygen tanks, cpap and other medical equipment at home. Home hospital. Less time in hospital, but no less sick.

Always far behind motor. Weak on the left side of the body and will be examined at HABU this autumn. Trauma and anxiety have settled in the little body and are reflected in behaviour. We spend a lot of time and energy supporting him emotionally and making everyday life as predictable as possible.
Many tests have been done in Stavanger, at Riksen and Ullevål. Some normal, some very abnormal. Severe lung disease, but which lung disease? The doctors are doing everything they can for us, but they don't know.

"I'm afraid to die, mom," Max said when he was 4 years old, gasping for breath. What do you answer then?

Little sister Heli came as a lovely pre-Christmas surprise in 2013, she also had a visit to the neonatal intensive care unit due to early water break 6 weeks before the due date. A little jaundice and eating training, but otherwise everything seemed top notch. A month after returning home it started. Screaming 20-22 hours a day. The girl was in terrible pain. Colic, said the GP. My gut told me otherwise. Vomiting, respiratory arrest, food refusal, ragged breathing and screaming all the time.

After 6 months, she finally got help from the paediatrician. Medicines made everyday life easier, but the respiratory problems increased. Shortness of breath, wheezing and constantly sick. Admissions with breathing problems. We began to see the same pattern as with Broremann. Tests with the same results. Another oxygen concentrator came into the house. More medical equipment and aids.

And that's how everyday life is.

I am a working nurse, advocate, lawyer, doctor, social worker, physiotherapist, motivator, psychologist, personal trainer, night watchman and more. It is still not considered and still not recognized that I am doing a job. I have to go out into real working life. Stop Nav'e. What will it cost to put in a minimum of 3 man-years per children per day and night? Surely evening and night shifts are also entitled to a supplement? Sick leave for parents in financial ruin?

Psychologist specializing in children to process all the trauma the children get from being left to public servants because mum and dad have to go to work?

Because it is the children that this goes beyond.
I am the very foundation, the stable and safe haven for my children. No state should be allowed to take it away from them.

Bettina Lindgren