Jane

Fixed snapper for the Lion mothers, and en part of the Løvemammaenes Carry together-project.

Residence: Rogaland.

Marital status: Married to Øystein and has three boys. The middle one, Lucas, was 5 years old and died on December 16, 2021.

What am I doing? Works as a store manager.

The story of Lucas: Lucas was born in 2016. We took it for granted that we had a healthy boy, but after 2 days everything turned around. The moment we pressed the alarm button at the maternity hospital, everything changed. Nurses set off with our newborn and we followed to our first meeting with the neonatal intensive care unit.

Stunned, we stood and watched a herd of doctors and nurses trying to bring our little child back to life. Fortunately, they succeeded, but no one could explain why this had happened. It would take 2 months before we got that answer.

Lucas was born with a rare defect in the ABCC8 gene. This error caused a disease called hyperinsulinism. There are many different causes of hyperinsulinism. In Lucas, the defect in the ABCC8 gene caused the signal that regulated insulin production to be blocked. This led to an overproduction of insulin that did not stop even when the blood sugar became critically low. This is what had happened when we ran from the maternity hotel.

Lucas had then had critically low blood sugar for a long time. He had started convulsing and was barely breathing. The blood sugar was measured at 0.9 before we set off. When we arrived at the neonatal intensive care unit, he had stopped breathing.

Before the wonderful doctors and nurses had brought Lucas back to life, so much time had passed that the low blood sugar had caused extensive damage to his brain. These injuries gave Lucas several additional diagnoses such as severe treatment-resistant epilepsy, physical and mental developmental disabilities, and a long list of minor diagnoses that came from the brain damage. Lucas was 100% in need of care and in palliative care all his life.

Lucas was mostly a smiling and happy boy. He was very active and rarely at rest when he was allowed to do as he pleased. He really enjoyed singing and music, and he loved bright colors and things that glowed. The bubble tube in the kindergarten was the favourite. Lucas was a boy who could be poked and prodded and tormented by doctors until the tears rolled, but still bubble over with joy of life as soon as it was over.

We didn't become the parents we thought we would be.
We became the parents Lucas needed.

I am passionate about ensuring that all children have the right to a dignified life. That BPA (User-controlled personal assistance) should be an equality tool. That everyone who wants to be able to live as normally as possible!

I am also passionate about children's palliation being included in all local hospitals. We were prepared that Lucas would probably have a short life, but always chose to focus on quality of life instead of length of life. We tried not to think too much about whether he was going to be 5, 10 or 15 years old. The most important thing for us was to know that Lucas had a good life no matter how long he lived. He had that too.