Our family uses social media to advocate and raise awareness of Elise’s rare neurological disorder Subcortical Band Heterotopia (SBH) and Epilepsy.

We have connected with other families around the World who are also on this challenging journey. SBH causes intellectual and developmental delays.

The most frustrating part is the unmanageable Epilepsy. Elise has had a ⅔ corpus callosotomy surgery (2019).This surgery definitely decreased the amount of daily tonic clonic seizures and constant drop attacks.

She also had a Vagnus Nerve Stimulator Surgery VNS (2022) this helped reduce the constant myoclonic seizures clusters which interrupted her daily activities. Epilepsy is still a daily fight for Elise. It will always be our biggest worry.

Thankfully the amount of seizures are lower and the recovery post seizures are better too since these two surgeries. SBH doesn’t define Elise.

Elise is a bright light that brings a smile wherever she goes.

She is a warrior.

She has this fight to keep going, to keep trying and wants to try new things. She gets frustrated and upset when seizures interrupt her activities, she lets the wave pass then she goes right back to the activity if she can.

Her favourite things are being outside, animals, puzzles, coloring, music, watching movies, making crafts, camping, being by the water and mascots.

As I try not to worry about the unknown of what the future holds, SBH has gifted our family to be grateful for the time we have and to live in the moment.

We face each storm as it comes and look for that rainbow on the other side.

– Carole, Elise’s mom

💗💛💜💛💗 #MarchOnPVNH #Epilepsy #SBH #SubcorticalBandHeterotopia #DoubleCortex #SBHawareness #EpilepsyAwareness #RareEpilepsy #PurpleforElise
#Seizures #Seizureawareness

This entry was posted in #MarchOnPVNH, Stories. Bookmark the permalink.