Daniel and Friends Fund: In Rembrance

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...

Showing posts with label In Rembrance. Show all posts

Monday, November 2, 2015

Farewell...for now...Butterfly Angel, Bells

On the 21st October our beautiful butterfly, Isabella Maria Soares (aka "Bells" aka "Peanut") exchanged her earthly wings for those Heavenly-bound. Isabella's lungs, having fought off many nasty infections, struggled to recover from the last one and ensuring a healthy flow of oxygen to her precious body, despite ventilation, just became too much.

It was with heavy hearts that we made our way to Vredenburg last Wednesday to bid our final farewell to Isabella. A church filled to bursting point bid witness to just how loved and respected the family is...and the priest's sermon had barely begun when many a tear had already fallen. His words rang so true...Isabella came into this world with a struggle and left it equally so.

In her short four years, Isabella faced more battles than most of us will ever know. Born at full term on 22 June 2011 by normal delivery but was soon after transferred from West Coast Hospital to Panorama NICU after she only managed her first effective breath after 45 minutes. At Panorama Hospital Isabella was diagnosed with Perinatal Asphyxia, severe HIE, Meconium Aspiration and Epilepticus. She was ventilated for two weeks and underwent an MRI which confirmed brain damage. Doctors confirmed an official diagnosis of Quadriplegic Spastic Cerebral Palsy and prepared Isabella's parents, Michelle and Mario, for the worst.

Despite requiring several procedures to ease Isabella's eating challenges, needing medication to control seizures and later developing Khyposis, to name but a few of the hurdles Isabella encountered, the love, passion and peace with which the family embraced life was something to behold. Michelle, who very obviously dotes on Isabella and her younger brother, Marcello, is never to be seen without a smile and twinkle in her eye. Popping in (from 150km's or so away) to join us for a burger on Mandela Day last year, while fussing over Bells' gorgeous locks and gazing lovingly into her daughter's face is a memory to last a lifetime...such a "normal" mommy-daughter moment.

Mario, Michelle, Marcello and our beautiful Isabella will forever remain part of our Daniel and Friends Family...we can only but offer sympathy beyond imagine and a promise to be there with them through this time xxx

Saturday, August 29, 2015

For Daniel

Little Daniel le Roux earned his angel wings just seven days after Mariele Laurie, on the 23rd August 2013. It is his courage and determination to live, through struggles we can barely comprehend, which became the inspirational vision behind the Daniel and Friends Fund.

I love writing...love re-creating memories and experiences simply be stringing the right selection of words together. But I have struggled to find words which can, in any way, do Daniel and Mariele's stories justice.

Can there be any tragedy more unimaginable than losing your child?

Can there by any memory more cherished than one from which a whole new purpose is born?

At the Daniel and Friends Fund we regularly advocate that parenting a child with special needs not rob you of your dreams, your joy, your life...it merely requires shifting your perception of what those three things represent. But, while we are passionate about uplifting parents/carers, we are just as passionate about keeping it real and the reality is...very many parents of children with special needs face the possibility of losing their child at some point.

Channeling heartache and grief into an instrument through which you not only reach out to others, but dedicate yourself to ensuring a better quality of life for families travelling a similar path, is the very essence of why Kate and Lianie's vision for the Daniel and Fiends Fund is so powerful.

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