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The pain is sometimes so great that no words can express it and, when a child is in pain, words are even more insufficient! My little son suffers agony. He is 3 years old, has undergone 3 difficult surgeries none of which was successful. Filipek has been howling with pain almost incessantly for the last few months. We have a chance, probably the last one, for a normal life for Filipek. I am desperate and, if everything fails this time it will be the end for me; I will give up and break down because there is no more strength in me…
Filipek came to this world with bilateral fibular hemimelia, a defect that happens once in half a million births. His legs are deformed, there are no ankles, no fibulas, shin bones are bent 90 degrees to the back and significantly shortened, there are only two toes in the left foot and three in the right one… Filip does not stand or walk, he moves on all fours as if he was a dog… He has never even had shoes on his feet because none fit them; even in freezing temperatures we can only put socks on. I carry him in my arms everywhere. The worst thing is that he can already see that he is disabled. He still tries to stand up but always falls down; his entire body is in bruises… He is despairing and calling me: mum, hold my back, I want to walk... My heart breaks then. Every time.
I sometimes I think that someone has cast a spell on us because it would be insufficient to say that back luck has struck us; what we lived through was like a torture, as if someone was deliberately torturing us. Children with the same defect are operated in the USA where an orthopaedist of global renown, doctor Paley, has his clinic specializing in the treatment of such defects. He was supposed to operate Filipek and gave him 100% guarantee that he would be a healthy child, able to walk! However, NFZ refused to refund the treatment. It was a terrible blow and I broke down completely… I still hoped that good people might help us and tried to collect money for Filipek’s surgery. We did not make it, only a small part of the necessary amount was collected… However, it seemed for a while that everything could be fine: the doctor was coming to Poland and agreed to operate Filipek because one leg was in such a bad shape that we could not wait. Hope often blinks at fools. I was in for the worst day of my life…
Everything was ready. We have been in the hospital for 4 days; Filip was fasting in preparation for the surgery… He was isolated from everyone earlier so that he would not catch any infection. We have not been leaving home at all for 6 weeks. The doctor was already on the plane to Poland, the anaesthesiologist was waiting… A nurse came to us a few hours before the surgery and said that there was a child with varicella in the ward. That child was not isolated and could infect other children, including Filip… Because of that, there could be no surgery… I cried all night and could not function without sedatives. I have a heart disease – on that day, I thought that my heart would stop beating because of the stress... I was so desperate that I agreed for Polish doctors to operate my son one month later. I was afraid of their lack of experience, afraid that they would practice on Filipek. And it turned out that I was right.
June 2017 – left leg surgery. It lasted 5 hours instead of 2, Filipek needed a blood transfusion and there was a problem with keeping him asleep. He was inhumanly screaming with pain despite the catheters through which anaesthetics were administered intravenously. After 2 days, it turned out that rods in the leg slipped and the surgery had to be repeated! Inhuman pain repeated… Then, it was August and the surgery of the other leg. Months in casts interrupted only with tests and the taking of rods out of the legs with no anaesthetics! November – casts taken off… and zero difference in comparison with the condition from before the surgery except for large purple scars. I was told that time was necessary so I waited, rehabilitated but nothing changed. Now, I know that the surgeries failed and my son suffered in vain. He is 3 years old and still unable to stand on his feet; they are so crippled that even braces do not fit him!
Our family begged doctor Paley to take care of our Filipek. He still wants to treat our son even though he was shocked to see the effects of surgeries carried out so far. He has to repair what was broken and operate my son’s legs again. Moved by our story, he minimized the costs of treatment. It is the proof of how serious Filipek's condition is! However, the surgery has to take place as soon as possible; if we do not appear in the clinic in May we can lose our chance forever and Filip will remain a cripple moving on all fours.
Filip is suffering, moves away from people, gets hysterical if I want to go out with him – he is afraid that we may go to the hospital. He suffered such a trauma that he vomits out of stress in each new place. I am no longer asking; I am begging – I am so desperate that I am ready to do anything for my child to get his chance. It is my last hope that some good may happen to us this time, that we may make it. I am not exaggerating; you are my last hope…
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