Silence is full of words

Every child is different and develops at their own pace. However, there is a certain standard and once a child does not meet it, parents start observing their baby with greater caution. This was the case with Weronika. Before her first birthday, she started babbling and calling ‘mama’ and ‘baba’. Everything was ‘normal’, but then…something started blocking her. New words did not come, those she had known began to disappear. “She will grow out of this, she will start speaking with whole sentence,” we were told. She never did.

Until she was 18 months old, Weronika developed like any other child. Then, for no apparent reason, things began to change. With each passing day she knew less and less, every activity came with increasing difficulty. Although she could already grasp toys with her hands, she started forgetting what her hands are for. They started disturbing her, inadvertently getting into her mouth, as if she was a newborn. Every object fell through her fingers. She stopped responding to her name, she did not react to simple commands, she stopped talking. As if we ceased to exist for her.
 

Our daughter was disappearing and we didn’t know how to help her. We felt that we are losing our child. We started to look for the cause. The hearing test proved that her hearing was perfect, sight test showed no anomalies, there was also no sign of metabolic diseases – nothing gave us a clue about the roots of Weronika’s abnormal behavior. Most likely the symptoms were neurological, but the doctors failed to make a clear diagnosis. A bit like autism, but not quite, perhaps cerebral palsy. Weronika was prescribed medications, we were told it will help.  It helped – but only to repress her development even more. Actually, her development stopped and various distressing symptoms became more acute: her hands were moving and shaking, she had uncontrollable aggression attacks, she had problems with balance.  There were also periods of silence, as if someone put an invisible lock on the mouth of our daughter.
 

The illness, despite the prescribed medications, continued to progress. Drugs did not help. Day after day we were watching our baby struggling and suffering. This helplessness and a constant search for the causes lasted nearly nine years. Only three years ago Weronika was diagnosed with Rett syndrome. This illness mostly affects girls, which are called “silent angels”. It gradually takes away from them everything they managed to learn until its first symptoms. As if once again they had become babies.

 

Then the decision was made to discontinue her medication - the first small success. Weronika began growing, gained weight, started reacting to her mother’s words and, most importantly, she began to smile. We are learning our daughter by heart. Weronika’s silence is full of words. In every gesture, movement, look, the words are hidden. She tries to communicate them to us with her body, cry, smile. 
 

With the diagnosis, we learned that there is no medicine that would make our daughter healthy. But we also learned that there is a way to help her with daily routines and help her communicate with the world. Special prosthesis on her hands control the involuntary movement and help maintain normal body position. This reduces the risk of spine curvature disorders. Weronika still does not speak, but there is a way she can communicate with her loved ones. Speech Communicator is a device controlled by the iris. Through the pictures the girl can communicate everything that the illness hid in her soul. Unfortunately, the cost of this device is beyond our reach. 
 

The local city council decided to sponsor 60% of the cost of the device. After calculating all funds gathered so far, we realized that we still need around 20 000zl.  We have time until November 20 and we will not be able to gather this amount of money without you. That is why we ask for your help. 

 

We believe that Weronika, just like us, longs for the day when she will be able to use the speech communicator to express her gratitude for giving her a chance. Let's help bring the words out of Weronika’s mouth; replace the silence with the colorful and joyful words of a child.