30 July 2019
Dear all,
With great joy we see the green line of this cause growing, and with it grows the hope that our little boy will live. We managed to buy a little more time. We’re off to the USA on 24th August. We have our Visas. The fight for Antos’s life is ongoing; the next battle will soon begin.
The plan was that doctors in the USA will first perform cardiac catheterization, and then, after a couple of months, the operation… We know, however, that another scenario is likely to occur. The worse scenario… Finding out that Antos’s heart is so sick that the operation will be necessary immediately!
Again, we’re at the hospital… A couple of days ago, fear had us paralyzed. Antos had an anxiety attack, wet with sweat and swollen blue. This worries us hugely.
8th August will be Antos’s first birthday; this past year was the hardest in our lives… and yet, the most beautiful, for our boy is with us.
Dear all, we thank you, that you’re still with him, we thank you for every donation, for your thoughts, prayers, for your kind hearts. Please, continue the journey with us. Help us to get to our green line to our goal, so that we can save Antos, so that this was not his last birthday…
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17 July 2019
We now know the cost of Antos’s cardiac catheterization! We are to be at the hospital in Stanford on 28th August… That’s only a few weeks! We’re dying of fear, metaphorically, but this is the only way for our son to not die for real.
Prof. Hanley has saved many Polish children. Children, who, here in Poland, had little, or no, hope. And yet today they live! We dream of nothing else than for Antos to live.
Cardiac catheterization is only the first step, after which Antos will wait for another, the most important - the operation… For which we still haven’t raised the meant :( We’re worried for Antos, because he gets weaker and more tired every day. He’s not dealing well with the heat. Quick breath, swollen lips, purple hands and feet… That’s what it looks like today. The only hope is the operation!
Sometimes it seems that we’re used to the fear… when, however, it comes to the hard parts, we can’t sleep, everything falls out of our control, we can’t concentrate. Fear, paralyzing fear over our baby’s life. That’s what a day in our life looks like.
We’re worried, because we’re doing everything we can to spread our cause... When that green line stops, our hearts stop with it.
Every day we tell Antos that we’re not alone, that we have a wonderful army of helpers, who have opened their hearts to help him. You guys. We thank you, that you’re with us. Please, don’t leave us, be with us till the end, until the green line reaches our goal and ensures our boy’s life will continue.
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19 June 2019
We’ve been given a new, lower price for the life of our baby boy - there is hope!
Behind the window there is a beautiful summer. We also have beautiful news for you. The amount needed for Antos treatment in the US has been reduced! After long negotiations, the hospital has agreed to give us a rebate! Some have done it before us, and now we’ve also succeeded. This is a huge joy and chance for Antos. Our fear is getting smaller and our hope is increasing!
We’re going to the US for catheterisation soon. We have applied for a passport and visa for our Warrior… We’re likely to be in the US in July. And in a few months - the surgery. Still so much money needed, but we believe it’s going to be ok. It has to be!
We believe we’ve been blessed with angels we met on our way. With you. With people, who have been supporting us from the beginning, who have been fighting with us for the life of our Son, hand in hand.
Those who have suffered will understand a lot. This is how we feel it. Once we fought for ourselves, today we fight for the life of our baby boy and we’ll continue fighting for as long as his heart is beating. And you will do with us.
Dearest people, please be with us and our Son. Let’s fill the box with green colour and good deeds until it reaches 100%. So that, thanks to you, our Son’s heart will be able to beat and his life last.
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4 June 2019
More time, more fear… and one goal - so that he livesWe’re at home, but we’re starting each day with fear. Good news - Antos’ condition is stable, bad news - we don't know for how long. Our warrior is growing, but his arteries providing oxygen to his lungs are not growing with him.
Our collection has been extended, we have more time than we thought we had and we keep fighting! We know that until the surgery in the US takes place, every day will be unknown to us. There is nothing worse than being aware of it. We don’t know if tomorrow Antos may condition deteriorate, if he may require first aid or if the hospital will be able to help. We are scared by these thoughts.
Only the surgery will give Antos a chance to start each day (like in the attached photo) - with a smile… The US is a chance for life and good health for our baby boy - a wonderful, bright and brave warrior.
We’re awaiting confirmation on catheterisation quote and date from the US. The rescue is at the other end of the world… unthinkable, but true. We believe that everything is going to be fine ✊. It has to be!
We would like to thank each of you individually, but our army of good hearts has grown so much, that we are unable to name everyone… But please know this - we will always be grateful for what you have done for us and for Antos. You are fighting with us, hand in hand, for his life!
Please continue to support us...
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22 May 2019
100 days and finally that special one…
The fight for Antos’ life continues, but we have won one battle… We’re at home. We had been in hospital for 101 days, and we got permission to leave on the last one. It still feels like a dream. We worry that we may wake up and realise we’re at home alone, with Antos fighting for life in intensive care, with a poor chance to live…
We feel happy, but concerned. Being a parent has many sides. We carry, change, play with and hug Antos to sleep… But not only this. We also change bed sore dressings and debridement pads, look after the PD catheter, change the feeding tube… It is all difficult, and causes a lot of pain and tears, but we have to be brave until a better time comes.
Dear Auntie, dear Uncle of our Son, this smile is for you. He smiles so beautifully, but his look is serious, as if he understands everything and the fight, he needs to have.... And his biggest fight is yet to come.
You have been with us from the very beginning, from the moment we found out that our baby boy was dying, that he had only a few weeks to live… Thank you for supporting us with your thoughts, prayers and good words. We’re asking you to continue being with us until the day comes when we can share with you that Antos’ ill heart is going to beat...
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15 May 2019
We've witnessed a miracle… and we're praying for another
There's so much happening, the days are going by, but our hope that our baby boy wins his fight for life is not going away!
Not so long ago his condition was really tragic. Everyone who has been with us from the very beginning knows what we have gone through. We watched Antos dying. What has happened, the doctors consider a miracle. Antos is getting stronger. He smiles more often and sleeps at nights. He looks at us as if he doesn't believe he can see us…
We keep asking one question, how much time do we have? We were told a few weeks at the beginning but Antos' condition has improved so much that we may have more time… We have a few months to collect all the money for his surgery.
When we're with Antos, we can't believe how poorly he was. It's feels like a bad dream… a dream that has lucky ended. We believe that after the surgery in the US Antos will be fine. Other children who were treated there, have got a change to live. We have nothing left but to believe that our baby boy will also be ok.
Antos' ill little heart has opened so many hearts… We have met so many kind people. Thank you for supporting us in our flight for our Son's life. Thank you for making the collection reach the first million… We are grateful for your support, each good word and prayer.
We could not do it without you. Please don't desert us… we can make another miracle happen - we can save Antos' heart and life.
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23 April 2019
Antos is fighting for life and we're fighting for your support - please help!
Antos is fighting for his life and our hearts are trembling with fear that his tiny heart will stop beating…
Things have changed. Since Wednesday Antos has been in the cardiothoracic ward, in a private room. With us. We're with him almost all the time. We keep vigil. Our presence and care is the best medicine and Antos needs it more than ever… Unfortunately, his condition is serious. Our brave warrior struggles :( our baby boy’s condition is breaking our hearts.
In the recovery room babies are given morphine every 3 hours. Antos spent 41 days in the recovery room. He's been too weak to support his head, limp, vomiting… low oxygen saturation is the biggest problem... 65-80. That's very low. What is going to happen when he starts to move more, cry harder or eat from a bottle? We're too scared to think about it…
In order not to fall into despair we're trying to focus on the positive things. Antos' will to live, getting stronger every day, is one of them. Having been able to spend Easter together is another. Although we were in a hospital, we were together. During this life-celebrating festive, we were praying for one thing only - so that the life of our baby boy continues. For it to happen, we need your help…
I beg you for your support and prayers. In the end faith makes miracles… We need a miracle so much...
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8 April 2019
❗ Oxygen saturation is dropping, the fear is raising - can we save Antos?
The time is disappearing, but our despair isn't. We find it difficult to write about what is happening. Antos is still fighting. He’s in recovery, but very slow. His heart is battered. It's still beating, but it won't last long…
It's been 2 months, since our brave boy went to hospital, since his last walk, since the last time he saw his home. 2 months fighting for life. Instead of bed time stories he's only been hearing the noise of a cardiac monitor. 2 months of separation, extreme longing and fear.
Every day is similar - going to the hospital, waiting for visit time, returning to an empty home, and waiting for the next day when we can see him again. He is the only thing that gives us strength… we see him fight… We cannot give up either!
We thank you for all your support and ask you for more support, prayers, good words... We read everything. We’ve been sending medical documentation to different hospitals, we’ve been looking for rescue everywhere… It must come very soon. Antos is everything to us, we don’t want to, we cannot, lose him…!
We are begging you - there is no time left!
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Urgent! Antos is dying and it's happening before our eyes! We have very little time to stop his death!
Sometimes there is little time for help, and sometimes, as in this case, there is no time. We’re asking for your help, because in front of our eyes a child is dying! Antos is fading away - the doctors are not hiding it anymore. There's perhaps a few weeks left… This is how long his little heart will cope without surgery. There is no help in Poland. Our only hope is professor Frank Hanley from Stanford Hospital in the US, the surgeon who has saved other terminally ill kids. They are now doing well - David, Emilia, Julia…
Perhaps we’re chasing rainbows. Perhaps we're asking for a miracle… At Siepomaga, we know that miracles don't happen, but we can make them happen. Therefore, we’re asking you - save the life of this little boy with us. Don't postpone - without your help he may not be with us tomorrow.
Ola and Adam, the parents of Antos, said: “We are in a dramatic situation. Our baby boy is dying in front of our eyes... He's fighting for his life in intensive care, under the constant supervision of anaesthesiologists and cardiac surgeons. He must make it to Stanford Hospital as soon as possible! We are begging for your help, don't give up on him, we can still save him… his life is entirely in your hands!
We are allowed to see Antos three times a day for 30 minutes. We are longing for these moments all day every day. Nothing else matters… His room is white and sterile. We must wear hospital gowns. Each time we visit we look out for our Son with fright… we feel relief when we see him in his hospital bed... Some of his fellow little patients have passed away. Behind each name there is a dramatic story of fighting for life. The ward is filled in with the smell of hospital and fear. The worst fear of all - the fear for a child’s life.
The sense of our existence, our whole world is encapsulated inside this small bed with our only, 8-months' old child.
We had been waiting for his arrival filled in with joy... Midway through the pregnancy we were told of Antos' heart defect. 20 weeks of fear, uncertainty and many questions… Antos was born on 8th August, which was the most beautiful day of our lives… And the toughest one. Tetralogy of Fallot, pulmonary atresia and hypoplasia – these names like a bad spell are leading Antos to death.
At the beginning, the tragedy was not apparent. Antos was strong enough to not need surgery.... When we arrived home from hospital, his skin started to change colour to yellow like sunflower leaves. Alagille’s syndrome, liver malfunction, potentially requiring a transplant. These are called cowardly bullies as they attack in groups. We didn’t have time to accept our Son's illnesses, when his heart condition struck. Low oxygen saturation, heavy breathing, loud crying, cold sweats… and his new skin colour - grey like ash. The colour of oxygen deprivation. The colour of death...
Antos was readmitted to the hospital where he's been until today. He has had three serious operations, two sudden re-operations, kidney dialysis, three heart catheterisations. For two weeks he was connected to an ECMO, extracorporeal membrane oxygenation machine. Doctors have been honest with us – they have never seen a case like this before, they have never seen arteries like Antos’.
Nobody expected this. The catheterisation was going to give an answer on what to do next… The result was clear… Antos required an immediate stent implementation. His life was hanging by a straw. He was doing well only for a few days after surgery. The stent became blocked and the doctors had to re-perform the surgery... Once again, there was no choice, but to open Antos’ heart, even though his heart is not a book that can be opened again and again.
Antos was dying.
We watched it all. His little hands were limp on the bed sheets, his usually smiley eyes turned shineless, his skin turned white as the hospital walls. Even though blood was dripping from the drip - he was getting repeated blood transfusions - there was less and less life in him. The machines were working, but his heart was failing.
Please say your goodbyes – when we heard it, we cried all night. We are his Mum and Dad, we would do anything for him. We couldn't say goodbye. We knew that only 9% of children disconnected from the ECMO machine live. We underestimated our baby boy. He was among those 9% of children, even though no one was giving him a chance... The Polish doctors have been looking after him amazingly. They have saved his life several times. Unfortunately, they can't do anything more.
We've been searching for help where other children with the most complex heart conditions have been treated for help. In Germany - a few months ago prof. Malec referred us to the Polish hospital we are in now. In Italy - prof. Carotti didn’t want to take the risk… We will try to approach them again. We will fight. Only those who don’t fight, lose. We will never give up to fight for our Son’s life. At present, only prof Hanley, the surgeon treating the most complex and hopeless heart conditions, is willing to operate on Antos and give him a chance for life. If he can't save Antos, no one will.
We thought that money doesn’t bring happiness. Today, distraught, we know that it brings more – it brings life. Medical care in the US is the most expensive in the world. Over 1.5 million euro. 1.5 million euro for our baby’s life, for something that is priceless to us. We have to have at least half of this amount, for the clinic to admit Antos… We must have it now. Nobody can predict how long Antos’ heart will carry on for. Maybe a month, maybe two months... We can’t wait, because death does not wait either. If we're too late, our baby boy will die.
We're not asking for your help anymore – we're begging you. We will leave no stone unturned, until our baby is operated on and lives. We can either keep trying or watch our child die. If you are a Mum or Dad, if you ever loved someone, we believe that you'll understand.”
At Siepomaga we believe that this story, thanks to you, will have a happy ending. Please donate, share and make a miracle happen. Make Antos live...
