Meet our little warriors

Erik was born in 2024 after a perfectly healthy pregnancy and was developing normally until he was 5 month old. He started to have muscle jerks and seizures. During our first time in the hospital they could not identify through MRI, EEG and various CSF and blood tests what may cause his disease. After a comprehensive genetic testing, two months after the initial hospitalization, we have received the diagnosis of ASNSD.

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He's almost seizures free with topiramate and valproic acid. He has global developmental delay, microcephaly, hyperreflexia and involuntary movements. He loves sleeping in our arms and enjoys looking at highly contrasted images.