Event Description

Where do we begin… I’ve been a hydrohero  for 10 years now. It feels like an eternity but thanks to your ongoing support what seemed impossible at the tender age of 6 month old has been possible and manageable. Although my parents were ignored for months they knew something was wrong (head size & developmental delays). Since I have had a shunt revision but before this revision I had to have many MRI with and without contrast, have had many hospital visits, consultation with different experts and a shunt tap which was almost unbearable for my parents. After this surgery I soon experienced Bells Palsy, not too common among kids my age and a condition that’s rarely treated clinically in children. Let’s not forget all of this happened during the pandemic. As a result of the Bells Palsy steroids treatment began. June 2022 the day before my first graduation “Kindergarten graduation” my parents were told I was experiencing seizure. It was tough..I had to graduate, it was a milestone but i was on the floor crying in pain and tired because the night before I couldn’t sleep. My parents only wanted to hear that symptoms that started early 2022 were all related to a stomach bug but it wasn’t. 
I present well, my disabilities aren’t that visible and I often overcompensate but trust me, I experience seizures while I sleep, I experience headaches and when too tired my brain can’t handle it….you might see signs of Bells Palsy. I wish for a cure. I wish I can have better predictability. I wish I can have a normal brain. I wish that I never have to fight alone.