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...

Friday, August 21, 2015

Here's to a New Age!

The Daniel and Friends Fund has had an extremely busy couple of weeks.  I had mentally drafted a post, sharing not just the details of what we've been getting up to but, more importantly, the significance of it.  And how might taking part in a couple of charity walks and fundraisers be of significance? Well firstly, merely attending the most basic of events/occasions when you have a child/children with special needs, requires remarkably more planning than normal...whether you're arranging for someone to take care of your child and all the planning that goes with that or co-ordinating all the necessary preparations to have them join you.  Secondly, the passion and unwavering determination to retain at least some remnants of a "normal" life despite, sometimes near impossible, challenges is more than just significant...it's pretty darn close to heroic. And where there are heroes, there has to be a unicorn or two, or any other whimsical creature of choice...

And then one of our moms and DFF Representative, Sonja, sort of took the words right out of my mouth by posting this :

"These people who we are so blessed to have fun with, is our support group......SUPPORT GROUP! For those who do not know what it is like to be part of such a group I'd like to kindly offer that you join whichever group you need to should you face a challenge in your life.....we do not get together to cry and be sad....yes, there are tears....yes, there are sad stories, heartbreaking journeys.....BUT we hug and listen and care AND rise above the challenges to reach out to other people who might be feeling alone, feeling that they cannot speak out for fear of being judged, discriminated against, frowned upon....we are there to laugh, to be silly, to learn and to plan and bring to life projects that will serve our community.
Should anyone out there keep their pain to themselves for fear of the unknown, I want to urge you to take that step and turn pain into a positive outcome. With this specific group alone we have experienced so much awesomeness.....been silly at a "race", learned how to apply CPR, enjoyed outings together, planned pageant participation, awareness creation campaigns, cupcake mornings and art sessions....the list does not end. They're also giving back to the community by collecting pre-loved teddy bears for kids who want to share a hug, uplifting and maintaining an equestrian centre and supporting and advising each other through doctor's appointments, operations, scans, birthdays, achievements.....

WE are not there to sit around and feel sorry about our challenges - we are there to show our kids you can still try your best at an amazing life, we are there to show the world it can be done! Gone are the days of these challenges being locked up......here's to an age where we can be proud, where we can conquer, where we can love and be loved..."

One of the most profound comments I have heard over the passed few years came from an Occupational Therapist whose practice is literally a couple of kilometres away from her home, which means that she socialises/shops within the same area as many of her patients, yet sadly shared one day that she very seldom runs into any of her patients at the local shopping mall or restaurant, etc. Why? Because many of those families are opting for the security of their home as opposed to possibly exposing themselves and their child/children to anything from inappropriate staring to full-blown discrimination.

Thankfully though there is a formidable group of women who are not only casting those safer options aside, but inspiring others to do the same...

Who knew unicorns travelled in packs!
in aid of Breast Cancer Awareness :
Kate/Lianie/Anastacia (in front)
Lizel, Patricia and Chantelle grabbing a photo op
Sienna and Keenan enjoying the festivities
Not a single photo-propped opportunity went missed 
Nothing like some wet foam to awaken those muscles
on a cold, Winter's morning
Strolling down the home stretch
Little Sienna catching a ride with two beautiful unicorns

 And before we knew it, we had chatted and photographed
our way through the five kilometres. What a glorious
morning it was.
The Friday just before the TLR we celebrated Slipper Day with a little get together, for those moms who could make it :
 Slipper Day is a Reach for a Dream initiative,
a non-profit organisation which dedicates their
time and efforts to helping children with life-
threatening conditions, realise their dreams.

An interesting assortment of slippers were on show

Supermom Tamara blew us all away by coming along with all
four of her kiddo's...on her own!

Delish sarmies and a couple of cappuccinos later...

Group Pic
In the space of merely a few months, families dealing with special needs have definitely become more visible in the community...the hope that observation represents is overwhelming. Our moms are becoming more motivated, more assertive and more innovative in leading the way towards bridging the gap between our special needs community and the rest of society.
To this end, another one of our moms, Barbara Brooks, co-ordinated an awareness campaign called Kindness is Cool which launched it's first public event on Saturday, 15th August at St Faith's Church in Plumstead. The vision behind the campaign is to not only help raise awareness for the very many challenges families affected by special needs have to overcome, but also to encourage society to adopt the mindset that being KIND to people who have special needs is actually COOL.

Barbara sharing with us the inspiration
behind her vision for the Kindness is Cool
Campaign - her daughter, Abigail

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