
11/25/2024
Last year we introduced you to Alya, an inspiring young girl who came to the Epilepsy Center to treat PACS1 syndrome, an extremely rare neurodevelopmental disorder that causes. We recently received an update from her mom, Taruna, and just as we thought: there’s been no slowing Alya down!
“Alya continues to make progress with her communication device, remains mostly seizure-free, loves school, and is keeping up with her therapy schedule. She had a fantastic time skiing this winter and enjoyed a wonderful summer traveling around Europe.” 🌎🎿👇
When young Alya was diagnosed with a rare genetic disorder called PACS1 syndrome, her family launched an international search for answers.