Acknowledgement: Patient Worthy is honored to share this story by Erika Stariha, Co-Founder and President of SATB2 Europe.
This is Urban, my teenage firstborn.
He is joyful. Curious. Full of life.
Urban is non-verbal, yet he is one of the chattiest people I know.
With the help of his iPad, his Alternative Communication Device, he never stops expressing himself. It’s HIS VOICE. But to strangers on the street, it can sometimes look like just a screen and we irresponsible parents.
They don’t realize: without it, he would feel as though his mouth were covered.
Urban cannot jump, play ball, or mimic simple movements. Yet, he has learned to ride a bike, swim, and even ski.
He senses emotions instantly – who is happy, who is sad, who is cynical – yet he cannot locate his own pain, even with something as big as a broken bone or a toothache.
He has the mind of an engineer: fascinated by how things are built and who built them. He even pretends to draw up plans for go-karts or furniture – his way of imagining how he would create things, even if he cannot make them with his own hands.
He may not read, count, or name colours (yet), but he knows you need a wall plug and a screw to hang a frame – knowledge many teenage boys don’t have.
He loves to cuddle like a toddler, and his love is pure, simple, and abundant.
Urban has SATB2-Associated Syndrome.
Nowadays, it is thankfully becoming the norm to acknowledge the PERSON before the DIAGNOSIS – to describe a condition as something someone HAS, rather than something that DEFINES them.
But today, on #SATB2AssociatedSyndromeAwarenessDay, I reflect on how much a tiny change in the SATB2 gene has shaped his life: one C swapped for one T in a genome of 3.2 billion base pairs. Just one letter… and yet, it affects so much of who he is.
Can we really say that a neurodevelopmental condition does not define one’s life? Who would he be without that single letter change in his SATB2 gene?
The truth is: it influences him deeply, but it does not diminish him. Urban is still Urban.
He is unique. He is achieving his milestones, one by one, in his own way.
Yesterday, his achievement was bringing up five potatoes from the basement – exactly as I asked. And to us, that is a victory worth celebrating!
👏 Bravo, Urban. You inspire us every day.
💜 To all families in our tribe — today we celebrate awareness, acceptance, and above all, love.
