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Urban is joyful. Curious. Full of life.

He is non-verbal, but gosh, he is chatty and communicates all the time with the help of his communication device and also by using around 30 gestures and 3 spoken words.

He cannot jump, play ball or properly mimic spontaneously even a very simple movement, but nevertheless he learned how to ride a regular bike, swim and even ski independently.

He can immediately sense who is happy, upset, sad, angry or cynical, but he cannot locate where his own body hurts – even if it is a huge toothache or a broken bone.

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 does not count, read or name colours, but he knows that when attaching a frame on the wall, you need a wall plug, besides the screw, which many teenage boys don’t.

He likes to cuddle like a toddler and his love is pure, simple and abundant.

He adores his 10 years younger sister and vice versa, their connection is indescribable.

Urban has SATB2-Associated Syndrome which 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. He is loved.

Frequently asked questions

Simple answers for families, supporters, and professionals who want to learn more about SAS and SATB2 Europe.

What is SATB2-associated syndrome?

SATB2-associated syndrome, or SAS, is a rare genetic neurodevelopmental condition caused by changes in the SATB2 gene. It can affect development, speech, learning, behavior, dental health, sleep, seizures, feeding, and bone health.

What are common signs of SAS?

Common features can include developmental delay, limited or absent speech, dental differences, feeding difficulties, sleep challenges, behavioral differences, seizures, and bone health concerns. Not every person has the same symptoms, and the severity can vary widely.

How is SAS diagnosed?

SAS is usually diagnosed through genetic testing. A diagnosis is made when a disease-causing change, deletion, duplication, or disruption involving the SATB2 gene is found. Families should discuss testing and results with a qualified medical professional or genetic counselor.

Is there a cure for SAS?

There is currently no simple cure for SAS. Care usually focuses on supporting development, communication, feeding, sleep, seizures, dental health, bone health, and other individual needs. Research and clinical guidance are important parts of improving future care.