Łukasz was born too early and for many years, that’s all anyone could say with certainty. From his earliest days, it was clear that something was different, but no one could explain exactly what. Whether it was finding the right kindergarten, navigating school systems, or simply getting routine medical care like dental or neurological treatment, the journey was filled with obstacles.
It wasn’t until Łukasz was 10 years old that we finally had a name for his condition. With the help of whole exome sequencing (WES) - a technology that had only recently become accessible - he was diagnosed with a rare genetic disorder: SATB2-associated syndrome, also known as Glass syndrome.
Before this breakthrough, each small step forward felt like either a stroke of luck or the result of Łukasz’s irresistible charm. His bright smile often opened doors where official systems could not.
In A Short History of Nearly Everything, author Bill Bryson compares the process of creating a human protein to aligning symbols on a slot machine - but with 200 spinning reels instead of five. The odds of a perfect match? About 1 in 10 to the 260th power - a number so large it exceeds the number of atoms in the universe. And yet, against these astronomical odds, most of us are born without error.
Łukasz came very close. Just one reel didn’t quite align, and as a result, his body and brain work a little differently.
Because of this small glitch in his DNA, Łukasz cannot speak, run, or independently complete many everyday tasks. He can’t make himself a sandwich, tie his shoes, or tell you when he’s sad. But what he can do is live a joyful, fulfilling life—and that’s exactly what he does.
Now 18, Łukasz is a happy young man with a full heart and a curious mind. He loves music - especially his favourite playlist on repeat. He adores lemon cake and gets cranky when someone touches his things. Like any teenager, he has moods, interests, and a strong will. What sets him apart is that most of his time and energy are focused on learning the basic skills that others take for granted.
And that effort is paying off.
Łukasz now uses a speech-generating tablet to communicate. He’s learning to form words with magnetic letters and can colour inside the lines of an elephant. He’s even working on putting on his shoes by himself. These may seem like small victories, but for Łukasz and those who love him, they are monumental.
One of his proudest achievements? Learning to swim - something he worked at for more than a decade. The joy he feels in the water is contagious, and anyone who has seen him at the pool knows what pure happiness looks like.
When you meet Łukasz, he may not wave hello. He might not respond the way you expect. But make no mistake—he loves being around people. Every morning, he heads to school with a grin and a burst of excitement. While other teenagers worry about pop quizzes or homework, Łukasz simply looks forward to being part of the community.
He doesn't roughhouse with classmates or tell jokes, but his joy in social connection is unmistakable. To our delight, he even has a small group of admirers at school- girls who light up around him just as he does around them. Maybe there’s truth to the saying that some people simply have a presence that speaks louder than words.
Today, Łukasz is surrounded by a circle of supportive, compassionate people who believe in his potential. And what does he ask in return?
Just one thing: your attention.
A Poem that Łukas’ father wrote for his 18th Birthday:
Perhaps at night, when other sleep,
You climb the window sill and leap.
Then Peter Pan takes you away
To Islands of Eternal May.
There, in the rays of gentle sun,
You dance and sing, jump and run.
You are Mowgli, swing through trees,
Like a pirate sail the seas,
Or a cowboy on a rancho,
Ride a mule and play the banjo.
In the end, when you grow tired,
You meet your friends by the fire,
And tell them of the things that seem
No more than just a passing dream.
Then, as the earthly night is done,
You head for home, back to your Mom.
She will be there, so far away
From Islands of Eternal May.