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

Lena Joanna Mazurek
Fundraiser finished
Fundraiser goal:

Operation Le Fort III - the final stage of treatment

Fundraiser started by: Fundacja KAWAŁEK NIEBA
Lena Joanna Mazurek, 10 years old
Ustronie Morskie, zachodniopomorskie
Malformacja Chiariego, zespół Crouzona, siatkówczak – złośliwy nowotwór oka
Starts on: 30 September 2020
Ends on: 30 May 2021

Fundraiser description

Dear friends! It is not easy once again to ask you for help, when so large an amount of money needs to be collected, but such is the price of a life without pain and suffering  for my little daughter! It is not easy to ask, too, because this is not for the first time that we desperately call for your help. It is hard to tell our story in just a few sentences in its entirety, therefore, I point you to the previous collections. Each amount was clearly settled by presenting the invoices and other documents, required by the Foundation. So I ask you: before you judge me and my life, try for just a while to step into my shoes, walk the paths of life I walked and am still walking.

Try to live through my pain, sadness and suffering, try to go through what I have already gone through, fall, where I had fallen and raise again, like I had done. And when at last you have truly learned our story, only then you’ll have the right to judge me and my life. Just don’t forget to step first into my shoes for just a little while!

Lena Joanna Mazurek

Lenka was born on August 1st, 2012, irrespective of the fact that all signs had showed that I would never be a mother. Yet, a miracle happened and I have my little daughter! She is my only child, my greatest treasure! When she was born she was evaluated at ten points the abgar scale, so no wonder I was elated. But my joy was short-lived! Soon, at a private ophthalmological examination, I heard the doctor say: “Your daughter has a malignant eye tumor!”

Shock, despair, tears… Nothing else do I remember of this examination!

Within three days we were referred to the oncological ward of the Child Health Center in Warsaw, where Lenka was administered intensive cancer treatment. She was so little and helpless, a speck of life just born, who had to already fight for her life! After the third chemistry doze Lenka’s life parameters had deteriorated so significantly that the referring doctor decided that the therapy should be interrupted…

Unfortunately, soon the Crouzon Syndrome popped its terrible head, too! The Crouzon Syndrome is an extremely rare genetic condition, causing the skull bones to grow too slowly. Each day the brain is being more and more crushed inside the head. This, in turn, results in a craniofacial malformation. The face of such a little child looks differently, than in completely healthy children. The little one’s head is malformed: simply, the brain has not enough space within it and this results in turn in exophthalmos, this leading finally to blindness, unless a cranial surgery is performed in time. And this is just a fraction of what complications may result from the Crouzon Syndrome. To be blunt, this condition may simply lead to death and only a timely surgery, consisting in increasing the volume of the skull, may save the child!

When Lenka was seven months old, she had a ventriculi-abdominal shunt implanted, but as soon as five months later doctors at the Child Health Center fought for her life, again, because of brain oedema. A cranial vault enhancement surgery was necessary. I hoped that hits was all that was needed, that the worst problems are passed, yet as soon as I regained my faith of a better life, another blow hit us! One and a halfa year following this surgery problems appeared, again. My little daughter started to feel ill, strong headaches began. Lenka suffered such terrible pain that she screamed, whined and whimpered during these strokes.

Lena Joanna Mazurek

I believed this had something to do with the shunt, but after a head CT scan was performed it turned out that the reason is elsewhere. The doctors had no idea, how to help. They just suggested that I should give Lenka more liquids to drink. But the headaches were happening more and more frequently, finally striking every two or three days. They were accompanied by vomiting, vision and balance disturbances, and strong anxiety. Lenka’s screaming, this unspeakable suffering of a helpless tiny baby, so terribly harmed by her fate, broke my heart! I was totally helpless myself. I could only cry together with her.

And then, God put a mother of a child on my path, who, seeking help for her little son, found Dr. Jeffrey A. Fearon in Dallas, USA. Having supplied all the required documents and a disk with the CT scan and MRI, a diagnosis was sent to me: Lenka suffers from a Chiari’s malformation! Thus, it was not only retinoblastoma, not just the Crouzon Syndrome, too, but yet another terrible disease!

The Chiari’s malformation is a cerebellar tonsils’ hernia, pressing against the spinal cord. This results in unspeakable pain. Yet another time my little daughter began fighting for her life! On October 25th, 2016, Dr. Fearon freed my daughter from her pain, performing a surgery of skull enhancement and an enlargement of the foramen magnum near the vertebral column.

During a follow-up examination I was informed that this had been the last moment for the surgery to be performed! I even do not attempt to imagine, what would have been had we not arrived in time for the operation! In case of Lenka, unfortunately, the Crouzon Syndrome proved to be a strong enemy in our fight for her life and health. In spite of the three skull enhancement surgeries already performed: one in Poland and two in the US, Lenka needs another, hopefully the last surgery to be performed to save her life.

This surgery that is urgently required for Lenka to undergo is the Lefort III with the use of the RED Distractor. This is a very serious and complicated surgery, but it is the only opportunity for Lenka to continue to live! It will mean for her a life without pain and suffering, but not merely this: it will mean her correct growth and development, her being like other children and, later, adults in the regular society.

I knew Lenka would have to undergo the Lefort III surgery right from the start, as this is the final stage therapy in the Crouzon Syndrome treatment, but I have just learned, now, that the surgery must be performed immediately during one of my meetings with Dr. Fearon, following a surgery that I had on September eighth, 2020. This was another shock for me! We must not wait any longer, because Lenka is suffering and my heart is breaking, when watching this! The fear, the sleepless nights, listening to whether my daughter is still breathing…

Living with the Crouzon Syndrome has been for both of us a difficult test and we both know that the situation may change for the worse overnight. This is the more possible because of the shunt that Lenka has implanted in her head, which may cease to operate properly any moment. If this should happen, a brain oedema would occur, which is extremely dangerous. Every evening I am begging God for a quiet night for my little daughter, each morning for another day without pain for her.

The Lefort III surgery with the use of the RED Distractor consists in the separation of the mid-facial bones from the skull. With the help of the distractor the mid-facial section of the face is each day moved a fraction of a millimeter forward, away from the skull bones, this lasting six to eight weeks. This sounds terrible, but it constitutes the only chance for Lenka to live a normal life. The facial deformation currently taking place in Lenka, results in dangerous sleep apnea, which not only cause tiredness and sleepiness during the day, but, primarily, seriously inhibit the child’s growth and development, as well as have a negative impact on her health condition. Too high an elevation of carbon dioxide in her blood as a result of her apnea, cause damage to her internal organs. This may eventually even lead to sudden cardiac arrest, infarction or a stroke, even in so small a child.

Lena Joanna Mazurek

The Lefort III surgery is the only chance for Lenka to have normal growth and development and a life without pain and suffering. But this is not all: she will be able to be like other children around her and not looking different. The cost of the Lefort III surgery, the flight with the medical assist, necessary in case of Lenka, as well as other costs, associated with a nearly three-months-long stay in Dallas, mean five hundred ninety thousand Polish Zloty’s. This is an enormous amount of money, driving me sleepless and appalled, but I fear much more the fact that I am unable to help my own child.

Dr. Fearon has currently administered monitoring Lenka at home, she has her blood pressure and saturation  measured regularly, and the sleep apnea checked all the time. All the measurements, recorded in the recording unit are then sent to Dr. Fearon, and we are waiting for his decision.

As for now, we do not give you the surgery date, as it simply may be any day.

We both are living now in constant fear, we know death keeps no calendar, we don*t know, when is the next time we will have to fight for Lenka’s life, again.

Therefore, I implore you from the bottom of my heart to help us. Not once have you demonstrated already that there is nothing impossible for you. Please, hear our call! We only have one another! Lenka is my whole world, my little starlet, shining brightest in my sky during the night, my little sunray, lighting my darkness, my hope for the better future. I love her best in the world, there is no life for me without her! That is why I am begging you all to give my little daughter a chance to live without fear and suffering, to give her another day of life!

Therefore, I turn to anybody and everybody, who can with their financial help cause my child to get the chance to develop and live happily, like the majority of other children. Please, become good angels for my child, and she in turn will prove with her life that she was worth your sacrifice.

I thank you all with all my heart!

Ewa Mazurek

Lenka’s mother

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