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...

Wednesday, July 13, 2016

Special Needs Parenting : Taking Care of YOU!


While the emotional and psychological implications of caring for a child with special needs is often a point of discussion, the impact on a parent/carer's physical wellbeing is consistently overlooked.  Parents/carers of children with disabilities have no choice but to place their bodies under extreme pressure on a daily basis and usually for indefinite periods of time and while this alone can be exhausting, there is the added challenge that the child they are caring for is growing as quickly as what they themselves are ageing. 

Thankfully, there are skilled professionals who can provide expert advice and guidance on how to both prevent serious injury to yourself and on how to strengthen the body in order to make meeting those physical demands that little bit easier.  One such group of skilled professionals, Aucamp & Wilsdorf Physiotherapists treated our Daniel and Friends Fund parents to an informative and delightfully entertaining morning on this very matter. 

Compromised strength as your body tries to accommodate your growing child, together with continuous repetition of high-risk movement, such as carrying a non-mobile, 25Kg child on your hip for extended periods of time or lifting your child into and out of the bath every evening, can result in painful and debilitating muscle and skeletal injuries, which in turn could cause the following :
  • Lower back pain (usually caused by muscle spasms and/or discus lesions)
  • Sciatic nerve injury
  • Rotator cuff injuries (shoulder)
  • Carpal tunnel syndrome


Getting to know and utilise your Transverse Abdominus Muscle - often referred to as the corset in Pilates, the transverse abdominum muscle is the deepest abdominal muscle, which extends from the belly button up to the rib cage. 

It wraps horizontally from the back of the body to the front and its main function is to maintain tone of the abdominal organs and to interplay with many core components, ie. the spine and the muscles surrounding the spine and other abdominal muscles.  Your core is the essential originator of most of the body's movement, as well as is the determinant for the quality of an individual's posture, aligning the trunk if the muscles all have the proper tone.  Because of this structure, the core is a good way to help prevent lower back pain and/or injury. 


 Bath Time :
      Always centre your movement from your core when moving your child
      Keep your back straight, avoid uncomfortable positions and never rotate your back when you move
      Keep the child as close to your body as possible
      Always go down or up to the child’s level
      Make the area as comfortable as possible and think out of the box with regards to prepping the area before the time, etc. 
      Use a bath mat to prevent sudden, strained movement should you or your child slip
      Make use of a bath chair where possible
      Keep toiletries close by and prepare all necessities beforehand
      Place a cushion under knees when kneeling next to the bath
      Raise the bath, if possible
      Make sure not to rotate your hips when transferring child into or out of bath
      Ensure that the water level is not too high
      When warm enough, dry child before taking out of the bath (to prevent slipping)
Bed Time :
      Ensure the bed is at a comfortable height
      “Log roll” the child onto his/her side first
      Keep your knees comfortably bent
      Use a slip-sheet movement where possible
      Wear comfortable clothes
      Make sure equipment is always at its highest functional level

Log Roll
Transferring child to and from vehicle:

      Make use of a small step-ladder if the car is too high
      Hold your child as close to your body as possible
      Keep the child in a sitting position
      Position pram or wheelchair before hand
Physiotherapist Annegret Wilsdorf demonstrating "Log and Roll"

And the benefits of keeping your child close to your body

Instruction on effective core exercises was enjoyed by young Pierre Cloete

once again, giving so generously of their time and knowledge.