Rehabilitation center for 60 disabled in Poland

Hello, my name is Mariola and I am mother-grandmother of Eric – a wonderful boy with Treacher-Collins syndrome, who really needs Janaszkowo Settlement. Yes, I know how it sounds – almost every word is a riddle. So let me reveal it all to you from the start.

Here comes the first puzzle: Treacher-Collins Syndrome is a rare genetic disorder. Professionally, it is referred to as facial-mandibular dysostosis, because it is manifested by many deformations of the bones and tissues of the face and head. People with this illness have no or partial and misshapen earlobes, smaller jaw, slanted eyes, acleft eyelids and palate and their nose is deformed. Lastly, the underdevelopment of the zygomatic bones makes them look as if they don't have cheeks.

Riddle number two: I present to you not one, but... several Wonderful Boys. You probably know the first one because he is the main character of the novel, and then of the blockbuster with the famous American actress Julia Roberts. In the movie, Julia plays the role of Auggie Pullman's mom, who always wears a space suit helmet on her head to hide her face from intrusive eyes. Yes, Auggie was born with Treacher-Collins syndrome. Just like three other Wonder Boys: my two sons and my 7-year-old grandson Eric. Well, if such a genetic syndrome statistically occurs once in tens of thousands of births in the world, you have to admit that we are the „chosen ones”. 

Riddle three: why am I a Grandma-Mom? That's what Eric called me when I became his foster mother, after it turned out that his biological parents couldn't take full care of him.

The fourth riddle, or the question: what does Eric need the Janaszkowo Settlement for? Let's start from the beginning. We always joke that Eric was our Christmas present because he was born on December 22nd. We were not surprised by the fact that he might inherit a defective 5th chromosome from me and his father. 

Eric was born with undeveloped ears and fused nostrils. He underwent his first surgery when he was only 1 month old. The second one took place when he was 1 year old. Doctors placed special tubes over his tiny nose to help him breathe more freely. Earlier, when he was 8 months old, he received his first hearing aid. Thanks to it he could hear, but poorly. Now, Eric is 7 and most of his life he has been travelling from one specialist to another and there are still more craniofacial correction procedures ahead of him.

Today, Eric attends the first grade in primary school with integration classes. Although his condition is not as visible as in the movie Auggie, people still gaze at him – with sympathy, interest and sometimes with disgust. Especially at times when his face is not covered by a hat or glasses. I think that Eric is starting to realize his otherness because despite being cheerful, bold, communicative and open to other children, he does not like to draw attention to himself and, for example, does not want to take part in school plays.

When it comes to relations with people he is an individualist, just like in any other parts of life. He is the one who decides with whom he wants to talk and to whom he will not say a word. Same thing is with the choices of what he will eat, what he will wear or what he will do. Eric also has a lot of hobbies: reading (books at the 3rd grade level), drawing, playing with Play-Doh, collecting toys, singing and playing the keyboard.

Sounds impressive, right? But believe me, it didn't come easy. It is the result of tedious, daily exercises with different specialists. Treacher-Collins syndrome does not directly affect Eric's intellectual condition and abilities. However, my grandson needs continuous support in order to develop properly and become an independent adult one day. For many years to come, Eric is going to need help, e.g. speech therapist in order to speak clearly and communicate with people despite the deformed face and nose, a physiotherapist who will help him to strengthen the muscles, a sensory integration specialist to properly read all stimuli coming from the world and a psychologist who will help him to prepare for the difficult adolescent period and for the adulthood, without feeling different and lonely.

Those are the reasons why both Eric and I are waiting so much for Janaszkowo Settlement and for the rehabilitation classes which will take place there. 

Help us build the Janaszkowo Settlement!

The text was written and published on May 12, 2021.