Daniel and Friends Fund

Daniel and Friends Fund
The Daniel and Friends Fund...creating the platform for a stronger, more intimate special needs community

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, December 11, 2016

Christmas Function 2016 - Giraffe House

On Sunday, 11th December, 46 families gathered excitedly at the popular Giraffe House to attend the 3rd Annual Daniël and Friends Fund Christmas Party and despite more than 140 guests attending the function, the atmosphere was filled with companionship and intimacy, what one would expect, instead, from a small, close family gathering. The group reflected on the past year and then, with unrestrained emotion, proceeded with the traditional lighting of candles in remembrance of the children who had earned their angel wings.  There was not a dry eye in sight as the announcing of the Little Miss and Little Mr awards began, a light-hearted yet meaningful sentiment through which to recognise some of the moms and dads who had, during the course of the year, stood out in their own unique way.  Once the likes of Little Miss Magic and Little Mr Bounce had graciously accepted their awards and well-deserved applause it was time for the most jovial of Santa’s to make his merry entrance and entertain the children with his gift-giving expertise, while moms and dads headed off to the Mad Batter for some decadent pancakes.  Gifts torn open and tummies full, families gathered around for the highly-recommended reptile show to ease the function to an end, albeit with a somewhat acquired appreciation!

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!”

Saturday, October 22, 2016

Painting It Forward 2016

On the weekend of 24-25th September we had the privilege of being a part of Painting It Forward 2016 - an initiative started by Chris Lategan who, after dealing with the devastating consequences of a brain tumour (including losing his sight), developed a passion for giving back once his health...and sight...had been restored to him..  With this being the third Painting It Forward project Daniel and Friends Fund has been a part of, knowing what a wonderfully uplifting experience it would be with artists, volunteers and other members of the community working together to make it a success, not to mention the breathtaking murals which experience guaranteed us would be decorating the passages at the end of the weekend, it was with a great deal of excitement that we made our way to the paediatric ward at Karl Bremer Hospital on the Saturday morning. 

The passages were a-buzz with artists and volunteers eagerly wanting to get started on the project.  The ease and prompt reaction with which artists and volunteers signed up this year to be a part of the project made it very clear how quickly Painting It Forward has become a much-loved community project. 

The first task was getting everyone signed up, making sure the necessary indemnities were acknowledged and accepted as well.

And then it was off into the passage which the Karl Bremer staff had kindly (and most helpfully) prepped beforehand.

Next up was wiping down the walls, taping off the corners with masking-tape and then applying the basecoat.

Before too long the artists were able to start on their murals, while volunteers keenly took to filling up the bottom section of the walls.

An intrigued patient wanders out into the passage to observe the activities.

And the end of Day 1 drew to a successful close.

It was off to an early start on Sunday morning.  Last year's project saw a few of the artists working right through into the early hours of Monday morning to finish their murals, but as the ward needed to stay up and running throughout the weekend, the artists had to work within a specified timeframe. 

It's not often one gets to have a hospital-stay which is accompanied by such a colourful and exciting form of entertainment.

The enthusiasm, gratitude and excitement of Karl Bremer's nursing personnel brought an unexpected air of humility to this year's project, so there was no doubt that the walls needed their 'mark' as well.

Vanessa Speck from Quality Paint Supplies, who once again supplied all the paint for this year's project, popped in to see how the murals were coming along.  Sister Nguta's grateful smile never left her face for a second and she was thrilled to pose for a snap.

Jampie Fourie from NG Kerk Oostersee kept our team freshly supplied with tasty hotdogs on both Saturday and Sunday (three cheers for Jampie - Thank You!)

Taking on a project of this nature would not have been possible were it not for the overwhelming generosity with which sponsors contributed, yet again.  We humbly offer our thanks and gratitude to:

QUALITY PAINT SUPPLIES for, as mentioned, sponsoring all the paint needed for the project
FRANCO FRAZZITTA who supplied the brushes, paint trays, mutton-cloth and masking tape
IAN DICKIE GROUP who sponsored the food and refreshments
GLACIER (by Sanlam) who supplied the artists with Posca Acrylic Pens
STEPHAN DU TOIT PHOTOGRAPHY for offering up his entire weekend to take photos
PREMIER SCAFFOLDING & KONIC HOME BUILDERS who helped transport equipment
KENRIDGE PRIMARY & TYGERBERG HOSPITAL SCHOOL for the use of their projectors
CANDICE RODRIGUES PHOTOGRAPHY for her awesome donation of toys to the ward, as well as contributing to the photos on Sunday afternoon

One can look through the pictures and listen to the feedback given by those who took part in the event, but you really have to be a part of it to experience the incredible vibe upon which the project flows. Rest assured, there are many more Painting It Forward projects in the pipeline...watch this space! Of course we absolutely have to close out with some pictures of the murals.  While it would certainly be wonderful to include a pic of each and every mural, practicality dictates otherwise.  And so, as blogger, I have the awesome privilege of getting to choose some of my favourites.  To everyone who contributed to the project, from the distributing of the paint and brushes to the painting of the magnificent murals, a super WELL DONE! You guys rock!

Elanie Bieldt's Bedtime Stories - what kid wouldn't want a mural like this in their bedroom.

Although it hardly seemed possible, Sandie Gie managed to outdo herself again this year with her exquisite mural.

In between offering some comfort and much-needed TLC to one of the patients, Brandon Challis managed to finish this brilliant Alice In Wonderland themed mural.

Chris Venter's awesome Pirate Maze inspired by one of his illustrated children's books, "Waarvoor is Seerowers Bang?" (written by Jaco Jacobs)

Elouise Milburn's mesmerising Rocket Spiral

Jodique Fontein's Alternative Earth

Maxine Koen's enchanting Pixie Forest

And Kim Mobey's breathtaking mural. All the murals can be viewed on the Painting It Forward Facebook Page  

We were thrilled to have our very own DFF princess-warrior, Layla Loos, there on Sunday afternoon to add her contribution to the initiative.

And the only thing which could possibly have made this year's event any more awesome? A Painting It Forward event taking place in Tawain...at the exact same time!

In closing...a winning Painting It Forward 2016 Team
From left (back) Stephan, Chris V
(middle) Kate, Lianie, Chris L, Talitha, Nicky
(front) Anja, Sandie and Iqraam  

Monday, October 17, 2016

Different Is Cool...especially in a fashion-show

On Saturday, 17th September, we officially launched our DIFFERENT IS COOL Awareness Campaign in a way that could not have been more different or more cool. It was with unrestrained excitement that an eager group of children gathered in the school hall of Curro Castle Brackenfell, intrigued by the red-carpeted "runway" of (for most) their very first fashion-show.
As they bravely made their way along the red carpet, each child revelling in the opportunity to let their uniqueness shine, the message at the heart of our event rang out loud and clear - that even though they may move a little different to most, speak a little different...breathe a little different...even "eat" a little different - their hearts' desires remain the same as any other child...to be noticed, be able to take being accepted as a given and (perhaps one of the most important) to be considered worthy of friendship.
While promoting the awareness campaign on as many platforms as possible (which has included a newspaper article and, more recently, an interview on Cape Talk Radio) the essence of our campaign has been incorporated into a short-but-informative educational program which is ideally focused on primary school children. The program lasts not much more than fifteen minutes, includes a short play, a brief presentation followed by a Q&A session (complete with prizes) and finishes off with an interactive game and can be easily slotted into a morning assembly, a holiday program or even a Sunday school schedule.
DIFFERENT IS COOL is not only focused on raising awareness for the challenges differently-abled children are faced with, but hopes to also provide neuro-typical children with the empathy and confidence to embrace difference amongst their peers.  Not to be overlooked is the effect disability often has on the siblings of children with special needs and not always being emotionally equipped to explain to friends why a little brother needs a wheelchair or an older sister still cannot speak, can sometimes lead to the sibling withdrawing and then becoming a target of bullying themselves. Having a third-party step in and help friends understand not only that difference is nothing to be intimidated by, but also perhaps the challenges a neuro-typical sibling might have to deal with, could be a life-changing intervention. 
And so with a joint-passion for bringing our message to society, our fashion-show kicked off... 
The scene was set for our superstars!
Minki Burger from Lollos Fame, who also happens to be one of our ambassadors, opened the event with a few beautifully-sung numbers, bringing emotions to the surface from the get-go.
Next up was PeterG Comedy Magician who had the children riveted to his every move...
...and the adults just as engrossed in trying to figure out his puzzling antics. 
PeterG's comedy was just as entertaining as his magic tricks and had the audience in stitches.
After a quick break, it was time for little Nina le Roux to open the runway for the main attraction.
There was no shortage of confidence and "attitude" as each child made their way along the red carpet. Claire Strumpher waves calmly at the camera, completely at home in her newly-found element.
Raymond Kidson had the audience applauding the minute he stepped onto the carpet with his enthusiastic poses and delight in having his moment.
Beautiful Layla Loos, accompanied by little brother, Daniel, makes her way gracefully down the carpet.
While the morning was indeed about embracing difference, the spotlight was not our differently-abled children's alone. Where possible siblings were encouraged to share the runway, clad in their Different Is Cool shirts, as they sometimes more than anyone else are the most genuine advocates of accepting and loving those with special needs.

Leomar Swanepoel proudly escorts his little sister, Carla, down the red carpet.

Daniel Smit and Meghan van Schalkwyk having a practice "run" with Sam

Brothers Connor, Caleb and Troy smartly colour-coded and looking smashingly handsome
The pride and protectiveness with which siblings accompanied their respective brothers/sisters down the carpet was heart-warming and so very inspirational to be a part of.  Jade Jansen and brother, Keanu, share a private giggle.

Lovely little Liza Laurie quietly sits and contemplates the morning's events

While the children were, without a doubt, the stars of the show...the talent and wonderful entertainment of Minki Burger and PeterG rounded the event off beautifully.