Children like Weronika are often called "the silent angels". At a time when they should start speaking, they become silent. Most possibly forever. All that is left is eye contact, although even that is sometimes difficult. Weronika is with us, but it feels as if she was somewhere else. She is now 15 years old.
The defective gene revealed itself when she was 18 months old. Initially she became withdrawn, sad and absent. My bright and curious daughter has gone out like a flame. Her reactions were faint or delayed, we had limited contact with her. And I could not break the barrier she created. Today I know a lot more about Weronika's condition, but I need you to help her!
Rett syndrome attacks mainly girls. Boys with this illness usually die soon after birth. The mutation of the MECP2 gene causes abnormal formation of nerve connections. At the age of 2, Werka began to forget the words she had learned earlier. It was the beginning of a total loss of speech. She also started losing the motor skills – she had uncontrolled hand movements typical of Rett syndrome, such as clapping, unnatural bending, putting her hands in her mouth. My daughter was no longer interested in the games she had previously loved, and I was helpless because I could not reach her. I cried when I did not see any signs of cooperation in her eyes. I only saw a void there. It hurt my heart beyond words.
Rett syndrome includes symptoms of autism, childhood cerebral palsy, Parkinson's disease, epilepsy and anxiety disorders. Without rehabilitation, children with this disorder very quickly stop walking and a wheelchair becomes the only option. Werka walks independently. She can go up and down a few stairs. It is not easy for her, but it gives her joy. She is brave. She loves it when I read her fairytales or take her for car rides.
I spend with Weronika 24 hours a day. Luckily, she sleeps peacefully at nights. I watch her then, She looks like a healthy girl. Only the night she does not need to wear the orthosis that protects her from putting her hands into her mouth. Although they are relatively light, they very much restrict the movement of her hands.
Some people think that raising such a sick child is a punishment. I think it is a gift from God. Her smile and beautiful blue eyes confirm this. I deeply believe that someday she will be an independent girl, that medicine will find a way to help people with Rett syndrome. I want to maintain Werka's physical functions at all costs until she can get an effective treatment. The last 2-3 years have been very promising. Studies show that it is very probable that a way will be found to cure or stop the disease.
Weronika sees, hears and understands. She reacts to gestures and words, she senses people's intentions. She wants to cooperate, but often she simply doesn't know how. The whole world is working on a way to repair this damaged gene. And I stay hopeful ... I learn my daughter by heart. Weronika's silence is full of words. The words that she tries to communicate are in every gesture, movement, look and smile.
Weronika requires regular EEG tests - only this way we can get to know her illness better. We have to watch our greatest enemy all the time. Unfortunately, Weronika has huge difficulties with performing the EEG test on traditional devices. She cannot fall asleep "on demand", she cannot stay still. Such tests are then burdened with large errors, and we can no longer afford mistakes. The device we collect the money for is a solution that allows one to take a test at any time, when your child falls asleep and anywhere, such as in your own bed, and also conduct a test in motion. The right program then processes the results and prints them out for the neurologist.
We also want to make the device available for use by other disabled children with whom we meet very often. This collection will therefore help not only Weronika, but also all disabled children whose parents come to us. They will no longer have to sign up for the test and wait for months. They will not have to risk that the result will turn out to be wrong.
Please, stand with us for a fight for Werka and other ill children!