Daniel and Friends Fund: The Significance of the Insignificant

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...

Wednesday, September 9, 2015

The Significance of the Insignificant

Had you participated in the Blisters for Bread Charity Walk in August, you may or may not have noticed a group of "Wonder Women" making the most of every photo op available (and those not-so-available)...enjoying every moment to the fullest, matching each step with a reason to smile or laugh. Exchanging crowns and superheroes for petals and belts of ivy, those same ladies (plus a few more) joined in at the Medihelp Tekkie Challenge in aid of raising funds for the Jan Kriel School for Learners with Special Educational Needs.

That's great, you might think to yourself...I mean who doesn't love contributing to a good cause AND while doing something fun? But, is it really more worthy of a mention than any of the other couple of thousand entrants? Ordinarily, no! But then again, parenting a child with special needs is anything but ordinary. Planning a funky outfit, arranging meet-up points, a couple of kilometres during which to catch-up, strengthen friendships, socialise with the community and just be one of the crowd for a short time, momentarily pushes aside the usual thoughts which occupy our minds 24/7...is my child okay...am I okay...are their meds okay...are their doctors/therapists/carers/teachers okay...did I remember to make this doc appointment, give that med, arrange that surgery/therapy/assessment...is this temp just a temp, is this cold just a cold...too little stimulation...too much stimulation...what will the future hold for him/her...what happens when I am gone...who will advocate for him/her...understand...care...love the way I do?

So, a few precious moments to allow ourselves the luxury of becoming consumed with something seemingly-insignificant to some but yet a significant distraction for those facing special needs challenges on a daily basis, most certainly calls for the occasional crown, flower and impromptu photo shoot...