1999 John and Rosalie Schwarz decided that their two sons were growing up in a very different and privileged world to the one they had experienced in their childhood in rural Africa. As both sons were involved in the creative world of film making (the older son had graduatated from NIDA) we decided total them to Africa to make a video on the AIDS crisis.
So their holiday that year was to visit hospitals,orphanges,cemetries and farms and take 40 hours of film and interviews.
We had known in a statistical sense what was happening but what we found was a shocking human tragedy. A pandemic had swept through the southern part of Africa and was in the early stages of killing almost a generation of young and middle aged adults.
Often it was not recognised as HIV/AIDS and various illnesses were blamed and when it was known, it was too shameful to admit.
The farm owners we visited had lost workers but did not realise why the young people on their farm had died and when confronted with the facts of the pandemic they were shocked.
At this time there was no treatment for the disease and so the diagnosis was a death sentence. In the hospitals huge numbers of mothers coming to give birth were positive without knowing they had thedisease. A third of their babies were born with HIV infections and they were destined to die, while the uninfected babies would be orphaned.
We talked to many of the Zulu people and found that they were attending funerals every weekend and sometimes twice in the week. Mounds of earth with rough wooden crosses were seen around so many homes, We would never forget the faces of grandmothers who were left with grandchildren to raise after their mothers and fathers all taken by the disease.
In the cities there were unmarked graves crowded together, fresh ones every week and then in time grass would cover them would stretch as far as the eye could see.
When we returned home to Australia and started to show some of these videos to people ,we started to receive donations. We had not set out to forman organisation as we were busy at the time with our busy medical practice and involved in our own family as well as elderly parents. In a way the whole process had its own momentum.
At first it was just to get a separate bank account to keep finances straight, but then there were complications when it came to having an account and sending money overseas.
Right from the start we had volunteers who gave of their time and skills. An accountant to who donated generously to fulfil the legal side of a charity fund.
Then we were drawn back to visit each year, and so began the very sad years of visiting in the homes of dying mothers and young people. Taking with us medication for pain, holding suffering peoples hands and praying with people It was in a sense primitive palliative care.
We became involved in education to help people understand the disease and hopefully not get infected.
We supported orphanages who were overwhelmed with babies being brought in to them, sometimes dropped at their doorsteps. At one stage we paid for a hole to be built in a wall with a basket inside, so babies left there could be indoors and out of the weather.
We were puzzled when we first heard of a “child headed household” Tearful when we visited children who were so keen to keep their mud hut and small piece of land that they tried to live on their own. Begging from houses around them and surviving because of the kindness of neighbours and sometimes nearby relatives.
As time went on some ARVmedications became available that would keep the disease from progressing. But it was very expensive and not widely used. Eventually the drug companies allowed cheaper versions to be made and the “Pepfar Fund” in USA helped many more people receive the needed treatment. They did have to have the disease well progressed and we found many people we visited very ill but not quite reaching the “CD4 count” required. Sometimes if antibiotics were given to them they could survive long enough to receive treatment.
It was about this time that it was found that it was very hard to take the medication with a meagre diet. Vegetable gardens became part of our many projects.
Our project at Philakahle was one of the groups that we were able to support.
We were also involved with people caring for orphans often newborn babies in South Africa and Kenya.
With the advent of the widespread use of ARV’s (Antiretroviral Drugs) the prognosis of infected people had changed. Most infected people can now expect to live a reasonable life.
Our work has evolved and we now concentrate on helping people on treatment and helping caring for almost a generation of young people who are either orphaned or rendered vulnerable as a result of the many deaths caused by HIV