I founded PVNH Support & Awareness TM 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, Ehlers Danlos variant (PVNH4).
I originally launched the PVNH Support group in 2009 on Facebook as X-Linked Periventricular Nodular Heterotopia (PVNH). It still exists and continues to be moderated by me, Ella’s mom – and parents of young patients as well as adult patients participate weekly in the conversations and support eachother. The Facebook PVNH group is a private one and before members can join, a request for approval must be sent to me.
Before PVNH Support & Awareness TM was created, out of my grief first came Everyone Loves Little Angels – 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 the PVNH group, my family went from one angel in my heart to over 400 families around the world sharing a PVNH diagnosis.
This gathering place 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.