She ripped her daughter from death’s hands! Today herself is fighting for her life!

I got up as usual to prepare breakfast for me and my daughter, as each day prior to leaving for school and work. I started for the bathroom to take a shower. Unfortunately I didn’t reach she shower, for I suddenly felt faint and I began to sink to the floor, grasping the wash basin so I don’t fall to the floor with all my weight. I hoped to get a little better when reaching the cold tiles, but I didn’t. The only thing I remember is my imploring God to have Lenka in His care! I don’t remember anything else. I did hope Lenka was still asleep and hasn’t noticed anything, but no, she saw me lying on the floor.  She was very frightened and started to cry loudly.

This nightmare of mine is a disease that destroys one’s face, takes away normal look and makes one live with this stigma beyond description. You all know my daughter Lenka, whom you had helped so many times before, now you are going to hear my story.

The Crouzon Syndrome is a very rare heritable genetic defect, very obvious to the eye. It cannot be hidden under your clothes, because the disease tackles your very face, your facial skeleton. It’s the Crouzon Syndrome that has always caused others to point fingers at me. So it was when I was a child and so it is today, because my appearance draws the attention of people passing by. For all these years I have been listening to malicious remarks of persons walking by. I thought I had learnt to liv with it, already, but when I here such comments, again, my hears is breaking and tears fill my eyes. When I was nearly seven years old, I lost both my parents almost at the same time. My dad died in May, and my mom in October less than half a year later.

The happy world of my childhood came crashing down unexpectedly. I lost at once the two persons most important to me! Although many years have passed since this terrible experience, I keep remembering all this as if it happened yesterday. After my parents died, me and my sister were placed in an orphanage, where I was all the time going through the pain of being different due to my looks. Children called me names, for instance, a frog, a toad, a ping pong ball, a monster. Nobody wanted to play with me or sit with me at the table in the dining room, because when they looked at me they suddenly couldn’t eat.

I remember very well the words of my older colleagues, they keep ringing in my head, in spite of the fact that so many years have passed since that time. It really hurts and will hurt until the end of my life! No one wanted to play with me and all I did I was doing alone. Alone I sat at the table, alone I played in the sandbox, alone I walked in the park, alone all the time. When I am writing these words, now, tears well up in my eyes. My disease and all I was going through have stigmatized all my life. While still in the orphanage, nobody dealt with my defect, no one ever thought about it as of a disease that could be tackled, because the disease was unknown. When with time I leaned more about my defect, I thanked God that I lived at all, even though I had no surgery performed.

Since that ominous day, when I recently fainted, I feel weak nearly all the time, I cannot function properly, I simply have no strength to do anything. I cannot even quietly lay down, because my head is aching continuously, I feel faint and my heart keeps pounding like a hammer. And, ias if this was not enough, my left eyeball started to fall out, which is accompanied by a terrible, inexpressible pain! To tell you, what it is like, my eyelid gets behind the eyeball, pushing it out even more, if this is at all imaginable in my case. This results in an unbearable suffering! This happens to my eyeball more and more often and in the most unexpected situations, irrespective of where I am and what I am doing, whether I am walking on the street, sitting at work, mopping at home or taking shower. It happens even while I’m sleeping! I’m frightened of this pain!

I can’t stand it and the pain IS unbearable! Seeking an answer to what is going with me, I decided to undergo a CT Scan of my head and I sent the disk with the screening to Dallas to Dr. Fearon, who for years has been treating both children and adults, among others those with the Crouzon Syndrome. Dr. Fearon has already twice saved the life of my little daughter, who, too, is burdened with the Crouzon Syndrome. A couple of days later I received an e-mail message urging me immediately undergo an MRI and send the screening back. So I did right away. The message I received just a few day after I sent the MRI of my head was most unexpected.

Although I am an adult woman, I had never had any surgery performed and I believed no surgery was awaiting me, since I managed to live up till now. But the truth is different. Since I was never operated on, a serious facial skeleton deformation and a strong proptosis have resulted. The fact I had no surgery performed resulted also in the loss of sight.

My skull is very deformed and the cranial bones are dilapidated due to the intracranial pressure that has been growing over many years. The ocular prolapse is the result of an extreme pressure, which simply pushes the eyeball out of its socket during a strong headache. The facial skeleton deformation results in dangerous sleep apnea, causing in turn the feeling of fatigue and drowsiness during the day, but significantly adversely impacting my general health condition in the first place. Excessive levels of carbon dioxide in my body as a result of the apnea, cause damage to my internal organs and they may ultimately result in the cardiac arrest, infarction or stroke.

To be able to live a normal life and to be with my little daughter Lenka, I must urgently undergo the Le Fort III surgery with the use of the RED Distractor. The surgery must be performed this June at latest!

It’s the only chance for me to live without suffering! It’s the only chance to stay with Lenka as long as possible. I don’t want my little daughter to share my childhood’s experience living without the most important person in her life, her mother. Lenka is my whole world, my little starlet, lighting my sky during the night, a sunbeam lighting up my darkness, my hope for a better tomorrow. She is my only treasure. Therefore, I implore all of you from the bottom of my heart for help! Do give me a chance to live without pain and fear of every coming day. The funds I must raise loom large in my mind and give me sleepless nights.

I do believe that with the help of yours, we are able to raise this huge money needed. You have shown many times already that nothing is impossible for you! You always were where your help was needed! You have heard every cry for help! Please, do hear me, now, too! Me and Lenka have only ourselves and these deadly diseases! So I reach out to all the people, who can make the fundraising progress bar grow green with your financial support. Give me a chance to live without suffering, but, more importantly,, to stay by Lenka as long as possible.

Lenka’s mother Ewa