Five years ago, our life suddenly changed when our son, Adaś, was born. Weeks of calm waiting changed into hectic nights without sleep as we waited for messages from doctors. We asked ourselves why our son is fighting for his life instead of calmly falling asleep in the arms of his loving mother covered with kisses. Why he simply could not come back home? Why he needs to go through numerous tests and follow ups to get his diagnosis. Finally, doctors found the answer and the diagnosis was: “charge syndrome”. Name of this rare genetic syndrome is an acronym of different inborn defects like Coloboma of the eye, Heart defects, Atresia of the choanae, retardation of growth and development, defects in reproductive organs, ear abnormalities and partial deafness.
This indicated that our Adaś is very seriously sick, and his life will become a constant struggle with disability. Every day is a struggle with pain, searching for a moment of happiness in a reality full of doubt and fear.
Today Adaś is 5 years old. We thought that because of his illness many developmental routes would shut down, but we were wrong.
Adaś is constantly showing us that every obstacle can be crossed over or one can go around it, even when the route will be long and hard. In spite of his disability he is very joyful and curious little boy.
His determination, optimism, gift of finding happiness in small things is teaching us that one should never, ever, give up.
We realised as well that in spite of his cleverness, ingenuity and hunger for knowledge, Adaś will never develop like a normal, healthy child. He is walking through the life with his own speed. He is trying to take contact with us by means of gestures, nonverbal signals. He is discovering colours, shapes, letters, numbers. He is fighting with limits of his body; he likes journeys and to play outside.
This would not be possible without help of doctors, nurses and therapists. Each therapeutic rehabilitation stay is for Adaś significant developmental progress towards full mobility. It is next giant leap in our fight for being like average child. Combined different therapies and contact with experts will result in our son catching up time and achieving level of progress we could not dream about when he stays home. Moreover, speech-therapy classes will improve his respiration and will accelerate removal of tracheotomy tube. This will enable Adaś to learn to speak.
For the first time from the moment he was born we will hear his laugh and after some time words like: “father”, “mother”. For it to happen we need your help. The costs of therapeutic rehabilitation stays are far beyond of our financial capacity. We kindly ask everyone with a kind loving heart. Please help Adaś.