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Griffin’s story – updated for National Epilepsy Month 2025
A Strong and Brave Future Two years ago Griffin lived a passionate and energetic life. His parents described his life as ‘normal, active and beautifully
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Ann’s story – One parent’s perspective
For Ann, being a mother has meant walking beside her daughter through the unpredictable world of Ring Chromosome 20 syndrome. From the first signs to
Ezra’s story
Every family living with r(20) has a rhythm, a daily routine built by love and patience. This story will focus on 16-year-old Ezra and how
Khloe’s story
An advocate for Karyotyping Khloe is a 14-year-old freshman in high school. She is active in school and is part of many societies, including choir,
Griffin’s story
Amy from the USA is Griffin’s mother. Here she tells us their journey to diagnosis, encompassing multiple hospitals and treatments, and the impact living with
Baran’s story
I am Baran’s Aunty, a physician in Australia, who has been with Baran and her family all throughout her r(20) diagnosis and management. Baran (age
Share your experience of r(20)
We love receiving your stories to publish on our website. Families around the world can really connect with your personal journey: through diagnosis, treatment, daily life and more.
