The operation will end Lenka's suffering! We need your help!

My dears... 

It's not easy for me to ask you for help again when there is such a huge amount of money to collect... but this is the stake for my daughter's health and life without pain and suffering. It is not easy for me to ask, especially since this is not our first desperate cry for help. It's hard to describe our whole life in a few sentences, but I'll try to outline it a bit. 

Please... Before you judge me and my life, put on my shoes for a moment, walk the paths of life that I have gone through and still go through. Experience my pains, sorrows and sufferings. Persevere as much as I have persevered, fall where I fell and get up as I got up. And when you really know our history, then you'll have the right to judge me and my life. But remember to put on my shoes, if only for a while... 

Lenka was born on August 1, 2012, even though all the stars in the sky said that I would never become a mother. And yet a miracle happened and I have my little daughter! He is my only child, my greatest treasure. At birth, my daughter scored 10 on the Abgar scale, so I was overjoyed. Unfortunately, my joy was short-lived, until the day when, during a private visit to the ophthalmologist, I heard "Your daughter has a malignant eye tumor". Shocking! Desperation! Tears! I didn't remember anything else from that visit... Within three days we were in the oncology ward of the Children's Memorial Health Institute in Warsaw, where Lenka began intensive treatment. She was so tiny and defenseless, a baby who had barely been born and had to fight for her life! After the third dose of Lence's chemotherapy, her vital parameters dropped so much that the doctor decided to stop the treatment. Unfortunately, Crouzon Syndrome also made itself known quickly. This is a very rare genetic defect. It consists in the fact that the bones of the skull do not grow fast enough. With each passing day, the brain is crushed more and more inside the head. This causes craniofacial deformity. The face of such babies looks different than in children in fully healthy. The baby's head is deformed. The brain simply does not fit in it, so the eyes pop out. This consequently leads to blindness if skull surgery is not performed in time. And these are just some of the complications associated with Crouzon Syndrome. Speaking bluntly, this disease can even lead to death! Only in time the operation was carried out, consisting of on skull enlargement, can save the baby. At the age of seven months, due to very high intracranial pressure, Lence was fitted with a ventriculo-peritoneal shunt, and five months later, doctors from CZD once again fought for her life, because there was brain edema. A skull augmentation operation was necessary. I was hoping the worst was behind us. But as soon as I regained my faith in a normal life, another blow hit us. After a year and a half after that operation, the problems started again. My daughter started feeling bad. Severe headaches appeared. Lenka suffered so terribly that she howled and moaned during these attacks. I thought it was a problem with the valve, but after performing a CT scan of the head, it turned out that the cause must be sought elsewhere. The doctors had no idea how to help, they only recommended additional water for Lenka. Unfortunately, the pain came more and more often. It has come to that occurred every 2-3 days. They were accompanied by vomiting, vision and balance disorders, and fears. 

Lenka's scream, this terrible suffering of a defenseless baby, whom fate had hurt so cruelly, broke my heart. I was completely powerless. All I could do was cry with her. Then God put a mother of a child on my path, who, in search of help for her son, reached Dr. Fearon from Dallas. After delivering all the documents and plates with CT and MRI, I heard the diagnosis „Lenka has Chiari malformations." So - not only retinoblastoma, not only Crouzon Syndrome, but also this! Chiari malformation is a hernia of the cerebellar tonsils, which compresses the spinal cord. This causes unimaginable suffering! My daughter once again started the fight for her life. On October 25, 2016, Dr. Fearon relieved my daughter of her pain by performing augmentation surgery skull and foramen magnum at the spine. During the follow-up visit, I found out that we made it at the last minute. I can't even imagine what would have happened if we hadn't made it to this surgery... 

Unfortunately, in the case of Lenka, Crouzon Syndrome turned out to be a difficult opponent in the fight for her health and life. Despite having already performed 4 skull augmentation operations (1 in Poland and 3 in Dallas), Lenka unfortunately requires one more life-saving operation, which I found out about a few days ago. 

And it all started with an eye examination on June 28. It was supposed to be an ordinary routine check-up… When the ophthalmologist told me that Lenka's optic discs were swollen, I felt electricity passing through my body, because in Lenka's case it means that there is increased pressure in her head, which is very dangerous for her health and life. I was speechless for a moment, but when I heard that there was a very ugly change in the right eye, I froze, because Lenusia is an oncological child and the only thing that came to mind at that time was that we have a recurrence, but what 

I heard it just knocked me off my feet!!! 

It's not good. There is a conjunctival tumor in the right eye. So not only retinoblastoma, Crouzon syndrome, Chiari malformation, but also conjunctival cancer... 

I can't say what I felt, because I don't think it's possible to describe it. Since that day, I've been broken into a million pieces. Immediately after leaving the office, I wrote to Dr. Fearon, who recommended that various tests be performed and sent to him. Yes of course I did. Serious and complicated surgery is urgently needed at this time! Lenusia did not come to mental balance after the last operation and here we have to get ready for the next one... The operation that Lenka must undergo urgently is the operation of enlargement of the posterior cranial vault with cranioplasty of the split skull. This is shock and disbelief for me, but I have to gather my strength and act, because we cannot wait. Lenka suffers and my heart breaks when I look at it. Fear, sleepless nights, listening to see if my daughter is breathing. Living with Crouzon Syndrome has been very hard on us and we know that the situation can change overnight. The more that Lenka has a valve in the head, which can stop working at any time. If this happens, Lenka will develop cerebral edema, which is very dangerous. Every evening I ask God for a peaceful night for my daughter, every morning for a day without pain for her... 

Dear… 

We really have very little time, and the amount to be collected is huge ... This amount keeps me awake at night and scares me a lot, but what scares me more is that I can't help my own child. I am very scared and I don't know what to do to relieve Lenusia from this terrible suffering. We both live in constant fear now. We do not know the day or the hour when we will once again have to fight for Lenusia's life. Therefore, from this place, I am begging you with all my heart for help. You have shown many times that nothing is impossible for you. Please hear our call. We only have each other - Lenka is the whole world to me, my star that shines brightest in the night sky ray, that illuminates my darkness with hope for a better tomorrow. I love her the most in the whole world, without her there is no life for me, so I am asking you all to give my daughter a chance to live without pain and fear for another day. So, I turn to all people who can, with their financial support, ensure that my child will have a chance to develop and live happily like most children. Please be good angels for my child and she will prove with her life that she was worth the sacrifice. Thank you all very much! 

Ewa Mazurek - Lenka's mother