My 6 year old son has just been diagnosed with Coffin Sirus syndrome after a looooong journey of getting to the bottom of his diagnosis. Finally we have an answer. I am his mother.
Declan was diagnosed with CSS in 2018. He also has a diagnosis of ADHD.
Early in his life we were told that he may never walk/talk or be independent. He is now (nearly) 10. He goes to a regular school in a special needs class but also spends a lot o...
My name is Naomi, I am 20 years old and I have coffin-siris syndrome. My affected gene is smarca4 but there are 10 known genes that can be affected to cause css. I am part of a Facebook group with over 1000 members so please come find us for help and...
Alice was always a little slower at developing, mainly with speech. After a genetic test the results were given Dec 2019. She mainly suffers from non-verbal, she is now 6.5yrs (Jan 2021) and although she is very expensive and makes similar sounds t...
