I was dreaming of a big house with grey walls and cold floors. Chill which was there was giving the feeling as if it was a human breath which was telling to escape. Without thinking I take the white bundle and open the first door - barefoot in nightgown - and run ahead. Endless narrow corridors do not allow to leave the cursed house, hundreds of doors lead to further tunnels like this maze never ends. And only a whimper from the bundle nestled to the breast does not allow me to stop... it is not far, I will take you there, but do not stop mourn - then I know that you are here and that I have the reason to run.
Another change in the ward but a parent does not change. Dream mixed with wakefulness, changing people passing by. We know that it is a weekend, because we can see less traffic in the corridors. The next hour near the Pawełek’s crib, God, which hour is it already ?... Never mind. Just a week ago, we thought we would never leave from our baby, the doctors said it was goodbye. Kidneys ceased to work, Pawełek swollen because of water retention... Plain rotavirus, which he caught could end his little life. We stood over the crib and said goodbye, once again... For over two years we struggle with life and death, we see it in the doorway, but still manage to slam the door in its face.
Pawełek was born with a heart defect. We knew it would be, so we could get ready. We also knew that he will have at least one life-saving heart surgery. However, after the operation we were still at the ward, because the results troubled the doctors. Pawełek was getting more yellow, his skin, eyes. Physiological Jaundice is not a disease, more than half of newborns have it. After 2 weeks it usually disappears but it still maintained, despite irradiation. Doctors were looking for what happens to Pawełek and it turned out that he suffers from Allagille syndrome, which causes disturbances in the liver, heart, kidney, pancreas. At the beginning the doctors tried to help Pawełek, but when we got a referral to a hospice, we felt as if strikethrough chance for Pawełek to live. Drugs do not cure they only sustained alive. And the word "Nothing can be done about" do not help us come to terms with the fact that this is the end.
If the Pawełek’s liver is useless, then we need to replace it with a new - I think these things can be done? With the new liver Pawelek could live. And so, 24 September 2014 consultation was held in order to qualify transplantation for Pawełek liver transplantation. "In view of the poor prognosis of the child to a distant post-transplant survival was decided to disqualify a patient with liver transplantation." That's not what we wanted to read - the transplant is supposed to be the last chance for Pawełek. We wanted to tear up this card to smithereens, but what does it change? Post-transplant survival - what does that even mean? Each day is a new beginning to die with my son, because no one gives him a chance to live. We sat on the Pawełek’s bed, and the world suddenly shrunk to the size of this tiny fists, which stubbornly clenched our fingers. To be next to him and not be able to do anything about it - horrible feeling. We would like to take him and fled where he will get help. But where? Is there such a place?
Yes there is. Since March 1, we are here at the clinic Saint Luc in Brussels. When our country turned from us, saying that nothing more can be done, the doctors in Brussels said "we will try". They do not hide it can go wrong, they said that the risk is very big, however the disease progresses rapidly and without a transplant Pawełek will not survive, so we should try and fight for this little life.
The transplant will cost 107.5 thousand euros. If we manage to collect this amount, Pawełek’s mother for the second time will give him life - she has to be a donor. Pawełek needs only 20% of her liver to live. Remaining 80 % is enough for her .Actually they pass all possible tests, Pawelek is amplified, he gets proteins and vitamins, which he does not absorb. This is a very difficult time for them – full of hope which at any moment can go off. How long they have to wait? We do not know, the doctors do not know. We only know that the transplant should be as soon as possible. A week ago, the Pawełek’s kidneys ceased to work, but he did not give up and fought so hard to stay with us. - We will do everything for our son, but we are not able to collect such a large amount and in a such short time. So please help everyone, thanks to which Pawełek can live. We promised him...