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!
Category Archives: Uncategorized
Freddie & Noah, 14 – United Kingdom
Noah & Freddie are now 14 years old. Noah was diagnosed with PVNH at 2 years old following an MRI for his seizures. Freddie was diagnosed when he was 5. We later found out they have X-Linked PVNH associated with … Continue reading
Posted in Uncategorized
Comments Off on Freddie & Noah, 14 – United Kingdom