On this day, two years ago, Kate (our Daniel and Friends Fund Chairperson) and her husband, Dirk Pieter, held their precious little Mariele for the last time...well, physically at least.
Mariele suffered with Aicardi-Goutieres Syndrome, an extremely rare Neurodevelopment/Inflammatory Disorder affecting the brain and the skin. The presentation of the condition is characterised by microcephaly, neonatal seizures, poor feeding, jitteriness, cerebral calcifications, white matter abnormalities and cerebral atrophy.
Mariele was admitted to Red Cross Children's Hospital at the beginning of July 2013...and was diagnosed with Pancreatitis and Renal Failure shortly thereafter. The weeks that followed were extremely traumatic for both Mariele and her family, who stood by helplessly as their little girl endured immense pain and discomfort. On the 11th of August, doctors shared with Kate that they did not think Mariele would be going home...on the 14th of August a decision was made to stop all treatment and ensure little Mariele was as comfortable as possible.
On the 15th August little Mariele's spirit slipped away and one day later she passed on.
We dedicate this post to little Mariele, to her parents - especially her mom who keeps Mariele's spirit alive through her passion and dedication to helping other families who have children with special needs...to Mariele's extended family and, of course, to little Liza who every now and again randomly bursts into precious giggles as Mariele gently tickles her xxx