Daniel and Friends Fund: Remembering Mariele...

What is the Daniel and Friends Fund?

On the 23rd August 2013 little Daniel le Roux lost his lengthy and courageous battle with Leigh Syndrome, exactly one week after another little warrior, Mariele Laurie, succumbed to complications of the syndrome she suffered from, Aicardi-Goutieres Syndrome. Professor Pieter Fourie, whose care of and love for Daniel and Mariele had gone over and beyond anything which might be considered fair professional expectation, was determined not to allow the heartache and devastation caused by such tragedy to go without lending itself to a higher purpose...and so shortly after Mariele and Daniel had earned their angel wings, Professor Fourie shared with Kate and Lianie, their mothers, his vision for an organisation which would provide much-needed support for other parents who might be on a similar journey. Just a few short months later, the Daniel and Friends Fund was born guided by, by this time, three special needs mothers, each symbolic of the three friends who had helped Daniel in the Biblical passage from which Professor Fourie had drawn his inspiration.

Since their launch in February 2014, the Daniel and Friends Fund (a registered non-profit organisation) and the dedicated and driven people behind it, have provided not only the emotional and psychological support often sought by parents of children with special needs, but have also committed to ensuring that these parents have had access to the necessary knowledge and training in order to equip them to care for their children in the best possible way that they can. While largely focusing on top priority issues like providing extremely affordable CPR courses, free therapy sessions, psychology-based programs for the parents, occasional donations of items/equipment necessary for caring for a child with special needs...the importance of also creating a fundamental base from which friendships and 'normalcy' can stem has not gone overlooked. To this end, the Daniel and Friends Fund mommies are often treated on special days like Mother's Day and Women's Day and, where possible, these invitations are extended to the entire family for celebrations such as Mandela Day, Christmas Day, etc.

The purpose of our blog is not only to provide the opportunity for sponsors, supporters and followers to stay in touch with the various projects and events we're busy with but also, and just as importantly, to provide an insight for others into what life entails for families on a special needs journey, as well as enlightening fellow parents to the fact that this journey need not be travelled alone...

Sunday, August 16, 2015

Remembering Mariele...

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

Daniel and Friends Fund