About PVNH Support & Awareness

I founded PVNH Support  & Awareness TM,, the interntional neuronal disorders community, in memory of my daughter Ella who passed away at BC Children’s Hospital. Ella had been battling a then-undiagnosed disease. And after the bravest of fight – the fight for her life – Ella took her last breath at just 7 months, 20 days old on March 27, 2009.

It took many more months before her official diagnosis was made: a rare disease called X-Linked Periventricular Nodular Heterotopia.

I originally launched the PVNH Support group in 2009 on Facebook as X-Linked Periventricular Nodular Heterotopia / PVNH Support Community). It still exists and continues to be moderated by me, Ella’s mom – and incredible and trusted team of moderators with lived experience: parents of young patients as well as of adults who are affected, and which are part of our leadership team. We participate weekly in the conversations and support each other. The Facebook PVNH group is a private one and before members can join, a request for approval must be sent to the Admin. The group is for adults who have a PVNH, GMH or SBH diagnosis, their spouse, as well as parents of children who have a neuronal heterotopia diagnosis.

In addition to the online supoprt community, PVNH & Awareness is responsible for organizing research studies, curating a disease registry, hosting webinars, conferences and educationa sessions with affected families, medical professionals and allies around the world.

Before PVNH Support  & Awareness TM was created, out of my grief first came Everyone Loves Little Angels – part of my my life mission which has for acronym the name of my baby girl, ELLA. With it came a promise to myself that I would honour Ella daily, by searching for her diagnosis and by creating ways to help others facing similar faiths as ours, among other pay it forward actions.

With  PVNH Support & Awareness and the PVNH Community, my family went from one angel in my heart to over 775 families around the world (39 countries in 2022) sharing a PVNH, GMH or SBH diagnosis.

This is is my way of ensuring no other families feels alone as I did for son long in advocating for my baby girl.

I am no longer alone, and neither are you.