SAS stories
- Age: 2007
- Country: Greece
Melina
18-year-old Melina works hard every single day, without complaint or hesitation. She is a true fighter - a young woman who teaches lessons of patience, courage, and love through her actions rather than words. In a world that often treats her as if she doesn’t belong, she continues to shine with kindness and grace.
- Age: 2015
- Country: Sweden
Celeste
Meet Celeste, the non-verbal girl with the most iconic SAS smile!
It took her 19 months to learn to walk, 6 years to say her first word, and 9 years to slam her first door... Knowing the hard work she puts in to achieve any step of independence keeps us astonished. We couldn’t be prouder to be her advocates!
- Age: 2018
- Country: Slovenia
Jaša
Despite setbacks, the love, perseverance, and specialised support from Jašas family have helped him make remarkable progress - like speaking his first words and learning to use a communication device. Every small victory is hard-won, but for Jaša and his parents, each step forward is a testament to hope and resilience.
- Age: 2016
- Country: Austria
Clara
Clara never gives up. She is non-verbal but knows how to swim, bike and ride a horse. She has her own pace to achieve new milestones, but she is so proud of herself when she does. Clara's smile can light up the darkest of rooms! Her resilience and creativity inspires us as she approaches every new challenge with enthusiasm.
- Age: 2007
- Country: Poland
Łukasz
Łukasz faces significant challenges in speech and daily tasks—but his spirit is unstoppable. Now 18, he communicates with assistive tech, is learning independence, and recently achieved a long-time goal: swimming. His joy, determination, and love for people shine through every day. Łukasz reminds us that even small victories can be truly extraordinary.
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.
How are donations used?
Donations help support SATB2 Europe’s work in family support, awareness, research collaboration, clinical guidance, and community-building for people affected by SAS.