Daniel and Friends Fund: November 2016

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...

Saturday, November 5, 2016

Life’s experiences teach us all the time!

My one lesson learnt has been to stand up after falling down, to reach out to others when I am feeling at my worst.
The parents and kids of Daniel and Friends Fund have become very dear and close to my heart, they offer a platform to families who have to face daily emotional and physical challenges with their children, who require extra care and attention due to special needs. A platform existing of care for each other as a community, for sharing in each other’s joys and heartaches, for standing up and speaking out in order to let these families know that they are not alone…….as they, for sure, are not alone! The 24 Hr support line via Whatsapp has brought many smiles to some gloomy days as well as practical advice from moms ‘in the know’ about overcoming day-to-day-challenges.

I am both humbled and proud to be a representative for DFF in our beautiful Helderberg . In 2007 I left the hospitality industry to study Montessori and from there became involved with Reach Autism where I trained and worked. It is here that I met, got to work with and know parents and kids who have become my role models and heroes!
Our own daughter has special needs and the life lessons this journey has taught me are invaluable - every day she teaches me about perseverance, courage and loving the everyday moments that life brings. Currently I am working at home with her on a therapy program from the Institute for the Achievement the of Human Potential where I attended a course and obtained a certificate in Child Brain Development at the Initial Parent Level. Together we work towards the goal of her reaching her fullest potential so that she can have a quality of independent life that every child deserves.
I am extremely grateful to have a husband and daddy for our Butterflygirl who support this journey, takes action when needed and that we can stand together through the tough times and the happy times. Thank you with my whole heart Sven Kuhnel !
I also believe strongly that people are in your life for a reason. This journey has lead me to be a part of DFF, for this I am very grateful!
To any parent/family facing a new journey with a special needs child/children I would give this advice :

As it is well-known that having a child with special needs can be too much strain for a relationship/marriage to see the journey through, I want to say to couples who do manage to stay together that this is the time that the two of you are going to have to be stronger together than ever before. Communication and full support for each other is so critical, but I promise you - when you have walked this road together for a few years you will love each other more than ever before and all the tears would have been worth it! Hang in there and seek help the moment you feel you need it!

Face your emotions honestly and head on and deal with them: cry when you need to cry, laugh when you need to laugh but always make sure that you have your closest family and friends surrounding you in all those times……those who are there with you and for you in your darkest moments will become your most trusting confidants. Have those dark moments, BUT you HAVE TO be able to stand up again and continue the fight.

For those times that you feel that you cannot cope: reach out and speak out. This is why a community like DFF is so important as there is no judgement, only love and support.

Speaking out and sharing about your journey is never a sign of weakness or seeking attention……it is a way of reaching out to others and showing them that the next step is possible and in doing so we hold each other’s hands and become each other’s inspiration.

As difficult as it is: try to not let all the labels our kids may have weigh on your mind, they have their place. Be careful that labels do not become mountains on your shoulders as the danger is that you may miss the beautiful and unique personality your child has…..and be certain that behind those silent days is a child who loves you unconditionally and who sees.

Never stop educating yourself and always keep searching for the best treatment your child deserves.

Never compare your journey to someone else’s…..your heartache, for you, is not less or more than anyone else’s. We all have battles to fight one way or another but the great thing is that our separate journeys can be walked together.

Take time out through all the mad rushes between doctors and therapists to just have fun with your precious child : sneak in a tickle fest or a ‘staring-at-the-clouds’ moment……you deserve this…..your child deserves this!

Being a part of Daniel and Friends Fund has taught me about being part of an active supportive community with one goal in mind - love. Love requires being unconditional and forgiving and kind…….and that is what I find in each and every DFF member. So as all our warrior families continue to grow and soldier through all their battlefields, I want to repeat the words of the loved Musketeers “One for all and all for one!”