Your contributions fuels our mission. Every dollar helps us support families, create and distribute awareness tools, host educational events for families and medical professionals, travel (occasionally) and most importantly: research. Thank you!
Tag Archives: cortical malformation
Everlee’s Story
At 2 days old, we had no idea that a CT would change her life forever. Continue reading →
Posted in Stories
|
Tagged cortical malformation, Everlee's Story, Filamin A, FLNA, Lung disease, multisystem, PVNH, X-Linked PVNH
|
Comments Off on Everlee’s Story
Sage’s Story
The following month was a blur of doctor visits, trying a few different medication options, but after she was still having multiple seizures a day, and one day they just felt different to me, we were back in the ER and ended up being admitted overnight for observation because she was started on phenobarbital (can cause decreased breathing and heart rate, so they needed to make sure she coped with it ok). Later that same week she had an MRI. Continue reading →
Posted in Stories, Word PVNH Awareness Day
|
Tagged cortical malformation, PVNH, Sage's story, Sage's story 2022, Stories
|
Comments Off on Sage’s Story
