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, 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
 

Saturday, May 9, 2015

The Great Gatsby Ladies Tea/Haven of Hope Equine Aid Centre Project

Haven of Hope Equine Aid Centre, situated on the Kaapzicht Wine Farm, is a non-profit organisation which provides FREE horseriding therapy to children with special needs. The exercise of not only setting up such a facility, but maintaining both it and the horses is, as one can imagine, a costly affair so functioning purely on donations can leave little budget for 'extras'...which in this case runs along the lines of toilets, adequate stabling for the animals, etc. 

 
 
A ministry close to our hearts, the Daniel and Friends Fund elected to host a fundraising event in the hope of being able to make a contribution towards the necessary upgrades needed at Haven of Hope. Keeping within the theme of Mother's Day, it was decided to hold a Great Gatsby themed Ladies Tea which, with giving the ladies an opportunity to dress-up and show off their hosting and decorative skills on top of a fun-filled morning complete with inspirational speakers, prizes and a trendy "photo booth', proved to be a huge hit. 
 
 

Kate (Chairperson of the Daniel and Friends Fund) and Lianie (Social Director) succeeded in putting together a memorable and beautifully co-ordinated event and looked stunning while doing it!

 

Rose-Hanna Brown, a Counselling Psychologist, shared with us a few choice "secrets" with which to maintain a healthy and fruitful parent/child relationship.
 

Lauren Finnerty, a Personal Trainer at Lunge with Lauren gave us a quirky and upbeat presentation on the importance of a good fitness program, as well as much-needed insight into some myths regarding exercise.
 

 This'd be me sharing how I managed to find myself delving into the world of Sh'Zen's natural skincare range after thirteen years in the completely unrelated commercial/retail property field.
 

The Daniel and Friends Fund mommies who were able to attend the function did so in creative splendour, as can be seen by their lovely outfits!


And last but not least, the beautiful La Provence Wine Farm in Stellenbosch, which caters for a host of different functions from weddings to corporate functions to company year-ends, was made available to us by the generous Joubert Family.
 
 
 
Should you wish to make a donation to Haven of Hope, one can do so as per the following :
 
Name :       Haven of Hope Equine Aid Centre
Bank :        ABSA - Brackenfell Branch (Generic code 632005)
Acc No. :   9295527721 (Savings Account)
NPO NO.   135-100
 
 


Saturday, February 28, 2015

This is how WE celebrate World Rare Disease Day...

...with a fascinatingly informative group therapy session provided by the lovely ladies of Aucamp & Wilsdorf Physiotherapists. We were taught how to incorporate therapy into our everyday lives at home, using basic household items to double as the usual physiotherapy equipment, eg. a rolled up pillow and some string/ribbon proved just as effective a tool as the foam rollers we're used to. The added benefit of this, apart from the obvious being able to ensure a degree of therapy on a daily basis without the unmanageable costs, is being able to avoid the anxiety and resistance some children are prone to when heading off to therapy sessions as the homemade items, used in a comfortable and familiar environment, brings with it a degree of fun to the whole exercise.






A little background info on Physiotherapy and it's highly beneficial purpose :

"WHAT IS PHYSIOTHERAPY?"
Physiotherapy (PT) can be used to maximise a child’s ability to move and control pain in the joints, muscles and bones. It also helps to improve a child’s range of movement in order to promote health and well-being. Physiotherapy is non-invasive and does not involve the use of medication.Physiotherapists concentrate, in particular, on problems that affect muscles, bones, the heart, circulation and lungs.

"WHAT DOES A PHYSIOTHERAPIST DO?"
Physiotherapists are trained to evaluate and improve movement and function of the body, with particular attention to physical mobility, balance, posture, fatigue, and pain. The physical therapy program typically involves educating the child and/or parents about the physical problems caused by their disability, designing an individualised exercise program to address the problems, and enhancing mobility and energy conservation through the use of a variety of mobility aids and adaptive equipment.

"WHO DOES PHYSIOTHERAPY HELP?"

PT can help a variety of types of disorders including neurological, orthopaedic and paediatric.

Neurological: Physiotherapy can be used to help children who have a neurological condition that affects the nervous system, such as Multiple Sclerosis, stroke and Cerebral Palsy.

Orthopaedic: Physiotherapy can be used to treat conditions or injuries that affect the bones, joints and muscles, such as sports injuries and arthritis. It is often used to assist rehabilitation after orthopaedic surgery.

Paediatric: Physiotherapy can be used to treat children who have conditions which affect their muscles or skeleton. Some of these conditions such as Muscular Dystrophy may be present from birth. These and other conditions may require the child to have help to improve balance, strength and co-ordination. Physiotherapy may be recommended for conditions such as Dyspraxia and Cerebral Palsy.

"HOW DOES PHYSIOTHERAPY WORK?"
Physiotherapists usually take a holistic approach by looking at the child’s body as a whole rather than focusing on individual factors. Education is also an important part of physiotherapy because as well as aiming to improve a child’s  strength and mobility, physiotherapy also teaches them how to manage their condition more effectively.

"ARE THERE ANY PHYSIOTHERAPY TECHNIQUES?"
Physiotherapists use a range of techniques including massage and manipulation, exercise and movement, electrotherapy and hydrotherapy.

Massage and Manipulation: Massage and Manipulation involves manipulating the soft tissues of the body. Different types of massage are used to treat different conditions, for example, to improve circulation, to improve movement of different parts of the body, or to relieve pain and help relaxation.

Exercise and Movement: Physiotherapy often includes lots of different types of exercise and movement to help with particular problems. This may include gentle exercise, such as walking or swimming, or specific exercises to target certain areas of the body. Exercises are designed to strengthen the body and improve the person’s range of movement, and normally need to be repeated daily for a number of weeks.

Electrotherapy: Electrotherapy uses electrical impulses to stimulate a child’s nervous system. These impulses are thought to override pain messages and help promote the healing process. There are several different types of electrotherapy including ultrasound (using high frequency sound waves to stimulate blood circulation), laser therapy (using lasers to stimulate cell function in order to relieve pain) and shortwave diathermy (generating heat within the body’s tissue to strengthen the tissues and reduce pain).

Hydrotherapy: Hydrotherapy uses exercises sessions in heated water to improve mobility and relieve pain.