Ella’s Fast Facts

Ella’s Fast Facts

Born: on August 7, 2008 at 39 weeks – by all appearances healthy

First Symptoms: at 2 months (Oct. ‘08)

Confirmation of life-threatening illness: by 3 months (Nov. ’08)

Period for attempts to confirm diagnosis: between 3 – 7.5 months (late Oct. ’08 to mid-March ’09)

Ella received her wings: at 7 months and 20 days (March 27, ’09)

Creation of Everyone Loves Little Angels TM : April 2009

Ella’s potential diagnosis: August 2009 (almost a year after she was born and 4 months after her passing)

Confirmation of diagnosis: October 2009 (6 months after her passing)

Confirmation of genetic lineage of PVNH in mom: April 2010

Official Diagnosis: X-Linked Periventricular Nodular Heterotopia with Ehlers-Danlos syndrome (PVNH4)