Daniel and Friends Fund: This is how WE celebrate World Rare Disease Day...

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, 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.

Daniel and Friends Fund