Lukas our little fighter – we believe in research

Lukas is now 2.5 years old, full of curiosity, very kind, social, caring for others and so cheerful small kid that never gives up that got quite a tough start in life.

Lukas was born with very small and non-functioning kidneys – Chronic Kidney Disease (CKD) stage 5. It was not genetic, just a tragic coincidence. In Sweden, this happens to only about a few children each year. During my pregnancy, we had no idea he was sick. It wasn’t until week 36 that doctors discovered there was no amniotic fluid left. I got a C-section at Karolinska Hospital, and that was the moment our lives changed forever.

At just four weeks old, Lukas had to start dialysis. He was too small to use a dialysis machine, so for almost three months he depended on manual dialysis, around the clock, with constant support from hospital staff. Dialysis helps remove toxins, waste products, balances acid-base and removes excess fluid from the body — something his kidneys could not do on their own. However, our doctors told us that dialys is doing about 20% of what a real kidney does, it helps survive though. Lukas went through 7 surgeries (first 4 during his first two months of life) and there were times we thought we would lose him.

When Lukas was three months old, we were finally able to go back home. Dialysis continued, but now through peritoneal dialysis (PD) with help of a machine. My husband and I learned how to manage the machine ourselves. In the beginning, Lukas was connected for up to 18 hours every single day. Over time, it was reduced to 13 hours a day — every day — until the very last day he needed dialysis.

We wanted to donate a kidney to Lukas as soon as possible, but his body was simply too small. We had no choice but to wait. Lukas spent nearly two years on dialysis. Then, in the same month he turned two years old, he received a kidney from my husband.

Today, Lukas no longer needs a machine to stay alive. But the journey is far from over. During the first year after transplantation, he needs frequent hospital visits to carefully adjust medications and make sure the kidney is functioning well. He must take immunosuppressive medications so his body will accept the new kidney and not reject it. These medications are life-saving — but they also slowly damage the kidney over time. Unless medical research advances, Lukas will likely need another transplant in the future.

We believe in research. Just 20–30 years ago, children like Lukas would not have survived. Today, he is here.

By supporting the Kidney Association (Njurförbundet), you help fund research so that one day no child will need such strong medications to survive. Children should be allowed to be children — not patients.

Thank you for your support. 💙

Lukas parents