16th May 2018

Roksolana’s family situation is tragic… We still fight!

Roksolana’s health state has drastically worsened. Unfortunately, her family lives in the village, in Ukraine where the hospitals are not available. When there is a danger to life you have to call the ambulance which costs about a month salary. The ambulance will take you to the hospital situated in the city but there is no equipment needed to save your life…

Roksolanka’s father did his best to get the subsidy for the surgery and the treatment in Ukrainian Department of Health. Unfortunately – as he says- the corruption is terrible and he did nothing. He received a call to arms to the war, as a kind of punishment, although the law prohibits inducting a father of two children…

The family had to flee from the country to save the daughter. Roksolanka, her brother and parents are currently in the refugee camp in Germany. They still fight for any chance for her treatment…

They have to wait so far. We still fight to make her treatment in Zurich happen – if we manage to raise the money, the help for Roksolanka will be for the asking! Their parents believe to the last… They ask for help, because there is nothing more that they can do.

******

Our daughter is not crying yet… She shouts in pain, blacks out and vomits. This is a hell on the earth and we can do nothing! The medicine doesn’t work, we just have a prayer now… We are running on empty because where can we have the strength from if we see that our child is suffering and we just can cry? We ask you for help! The doctors from Zurich want to operate her brain as soon as possible to save her life. But we cannot afford it. Please, help us save our daughter…

The terrible disease can kill our daughter at any time! Roksolanka is very ill but she is too little to know that. Moyamoya in Japan means the smoke. This smoke can bring the death if we don’t conduct the operation on time! We ask you for help, because the only chance to save the life of our daughter is out of reach for us…

The horror began last year in August when we visited Roksolanka’s grandmother in Warsaw. From day to day she was changing from smiling girl into the bundle of pain and suffering… The headache, shouting and vomiting – we were frightened! The doctors saw during examination that there was a cloud of smoke in Roksonlka’s head. They couldn’t believe but the diagnosis was unambiguous… Roksolanka is affected by the rare brain disease, on the angiography picture it resembles the spreading vapour. This is why it is called Moyamoya. It affects most often the young Asian people. Why did it affect our beloved child? Nobody can answer that question…

The death – since the diagnosis we are afraid of it. We go to bed and we worry if we wake up still having the daughter? But even the sleeping is more difficult… We are awake and we count every her breathe. We cannot look how the disease attacks her, takes her smile and brings the pain… The headache is enormous and sometimes leads to blackout! Roksolanka vomits, cries and we are totally helpless. This helplessness is the worst thing…

We couldn’t believe that such a misery affected our child. We started to look for help. Unfortunately, the tragic diagnosis was confirmed by the clinic in Kiev, Switzerland and then in Germany. Additionally, we found out that Roksolanka suffers the worst 6th phase! It means that all 6 cerebral arteries are affected… The disease progression is frightening. When we found out about the disease year ago, only one artery was affected. Now, all of them are affected!

Now she can be killed by a big noise, stress or infection! Moyamoya causes intracranial artery occlusion what leads to ischemia of central nervous system, stroke or cerebral hemorrhage. The death can take her at any time and will take us the meaning of life…

Roksolanka was born as a pretty and healthy girl. When she was 3, she went to the day nursery. However, this adventure didn’t last for a long time – continuous infections, inflammations, viral diseases all of that resulted with many antibiotics. Too many… The immunity was weakened and she suffered celebrospinalis. Fortunately, we reacted  on time and the brain wasn’t affected. The doctors drew the cerebrospinal fluid for the test – it was clear. Apparently, it was a happy end. We didn’t know that it was the beginning of our nightmare…

After three moths Roksolanka had a first epileptic attack. The diagnosis was made – epilepsy. The anticonvulsive therapy worked and epileptic attacks didn’t repeat. We had a neurologist appointment every three months. Our daughter was growing and developing, we were happy but once again too early…

The three years has passed and the nightmare begin. Moyamoya is a ticking bomb in the body of our daughter. When will it explode? We know that we have the only chance – they are able to cure our daughter in the clinic  in Zurich. We are qualified  for the surgery but we have to do it before the hemorrhage… The exchange of intracranial arteries is a complicated and dangerous surgery. However, this is the only chance to save our daughter. We want to protect her from a terrible pain and throw away the death! Then, we have hope for the second surgery that will release her from the disease and the rehabilitation which will let her forget. But we don’t think about  it yet. Now we have only one goal – to save our little daughter.

If we do it on time – we will win the life. If not… We don’t even want to think about it. We don’t lose the faith in the success. The wonder will come and we will raise that sum and buy her life. We believe in good-hearted people that will be touched by her story.  There is nothing else left for us. Please, help us save our dear one, our beloved daughter…

The parents