Daniel and Friends Fund: DFF Mamas

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, July 25, 2015

Moms 4 Moms - Housemarket

One of the most challenging, if not the most unwelcome, issues a family will deal with when having a child with special needs is the matter of financial exhaustion. Without doubt there are some families whose financial circumstances allows them the comfort of being able to easily absorb the additional and unexpected expenses which come in the form of intervention therapies, specialised nutrition, multiple doctor appointments, appropriate schooling/daycare, specialised equipment (wheelchairs, ventilators, etc)...to name but a few. But for most families, simply being able to carry these additional expenses within stride is not a possibility. Often, depending on the child's condition/s and individual needs, finding a suitable school/care facility is also not a possibility which brings with it yet another hurdle...additional costs on top of a decreased income.

For this reason, many moms of kiddo's with special needs have to create a means by which to supplement an already strained income and, more often than not, one which they are able to manage around caring for their child fulltime. The Daniel and Friends Fund Moms are, in particular, an incredibly creative and innovative group of ladies, each marketing their products individually through their chosen avenue...until an idea was born...a joint marketing platform which not only provides the opportunity for networking across our group of enthusiastic entrepreneurs, but also an opportunity for the community to come and get involved in a mutually-beneficial, informal setting. And so, with the help of some hugely-appreciated generosity from Christa Agenbag of the I-Learn Therapy Centre in Durbanville (who allowed us to use their beautiful garden, free of charge) we co-ordinated our very first Daniel and Friends Fund Housemarket!

Being our first Housemarket, expectations were conservative...but before we knew it, the garden was humming and filled with animated chatter about all sorts of things...exciting introductions, shared stories and, of course, the beautiful goodies on offering...

The beautiful, sunny morning despite Cape Town being

smack-bang in the middle of Winter, definitely contributed

to the festive atmosphere

Our market is an open opportunity for anyone wanting

to market their products (although we do try not to

duplicate products)

An impromptu photo booth proved wonderfully popular

An encouraging sight...securing the plan for another

housemarket some time in the near future

Moms Janet and Willa making sure our tummies

were not neglected in any way

Hanno Fourie enjoying one of Janet's delicious Fru Fru cupcakes!

The jovial mood had everyone in high spirits

Mom Justine grabbing a photo op, delish coffee in hand

Our Donate-A-Bear corner

And of course, how could we miss out on the photo booth xxx

We are planning our next Housemarket for the 26th September...please keep a close watch on our Facebook page for details.

Sunday, June 28, 2015

Rock A Bye Baby House - Nurturing Community Bonds

This passed week has brought with it many highs drawn not only from a growing support group, but also from the realisation that our society is still filled with the most compassionate and selfless people.

On Saturday, 20th June, Kate, Lianie and I headed off to the lovely Mondeor Restaurant to meet with Sonja (our beautiful Somerset West/Boland Representative) and three moms sharing our special needs journey, who were keen to become a part of our growing Daniel and Friends Fund family. Besides the obvious pleasure of having our group grow, being a part of the escalating number of families reaching out to make contact with other families travelling a similar path is so incredibly uplifting and encouraging. We seem to be entering a new age where having to shrink into the shadows and cope with our challenges alone is no longer necessary...not that it ever really was. But often, never knowing how society is going to receive your child with special needs, or even how your child with special needs is going to receive society...the temptation to rather keep to ourselves overpowers our desire to nurture existing relationships and/or initiate new ones.

The morning flew by in a gush of introductions, listening to each other's stories, sharing experiences and advice and the promise of newborn bonds...ever so often punctuated with a "Oh my, what a small world" or "Yes, my little one does THAT too"!

On Thursday morning we made our way to the Rock A Bye Baby House in Kuilsriver, which is a place of safety for abandoned babies. I, for one, was a little apprehensive with not knowing what to expect, but at the very least prepared myself for a fairly clinical environment and perhaps even depressing and/or sad.

The warm and friendly faces who met us at the door were anything but depressing and sad and our first step into the house was into a warm, cosy and homely surrounding. Yolanda and her team (many of whom are volunteers) dedicate their time and passion into providing these babies with a comforting and nurturing home until they are successfully adopted through an independent adoption agency (Rock A Bye Baby House is in no way involved in the adoption process). Also being a non-profit organisation, Rock A Bye Baby House relies heavily on donations, whether in the form of cash or supplies, eg. formula, nappies, toiletries, etc. It was a heart-warming experience to be able to make a contribution with some clothes and blankets, as well as a substantial collection of toys.

Lianie's 84-year old grandmother lovingly knitted each one of these beautiful little "hasies"(rabbits) herself which Yolanda suggested would make a very special adoption gift for each baby to take with them when they leave Rock A Bye Baby House...we couldn't agree more :)

It was a pretty emotional morning - while we weren't allowed to take pictures of the babies currently being taken care of, for obvious reasons, we were invited to pop our heads round the door to take a peek at what these little babes were getting up to...which essentially was being just about as darn cute as they could muster, so much so that you wish you could sweep each one up and away into your car. Walking along the passage and seeing the photographs lining the walls of the very many babies who have passed through Rock A Bye Baby House's doors over the last ten years, it's impossible not to marvel at what an incredible difference this organisation is making to the lives of these children...how differently their futures might have unfolded. The Daniel and Friends Fund will definitely stay in touch and look forward to a mutually beneficial relationship.

So many new moms have joined our Daniel and Friends Fund family over the last couple of months who, although they chat away like old friends on our Whatsapp group, have never actually met face-to-face. For this reason we arranged a Moms get-together on Saturday, 27th June at the Soet Emporium in Durbanville and once again, the table was a busy gathering of introductions, catching up, collaborating on ideas, shared excitement about upcoming events and generally just an exhilarating vibe which being a part of was like food for the soul!

Kate, Lianie and I sporting our "Denim & Diamonds" themed gear xxx