By Charmel Bowman
When Mark Satiya and his wife Sharon noticed a fine rash rapidly spreading across the body of their eight-year-old son Nicholas, they knew something was seriously wrong with him.
"He had a very high fever," Sharon recalls that terrifying day in 2004.
"Both his legs were in spasm and he was unable to walk.
"It was really frightening because it happened so quickly."
The couple immediately rushed their ailing son to hospital.
"At first it was suggested that he was suffering from German measles, but doctors weren't sure," said Mark.
"It was terrible seeing our child in so much pain and yet no one knew exactly what was wrong with him."
Nicolas was then referred to a child specialist who was able to diagnose the rare Kawasaki disease.
"We had never heard of it, which made it even more scary," said Sharon.
"His diagnosis was accurate, which meant that Nicolas could immediately start treatment."
Luckily for the Sitiyas, the early intervention meant there was no long-term damage to his arteries.
"The sadness is that other parents have lost their children to this disease because it has not been properly diagnosed. In some cases they were treated for other illnesses such as flu."
It was this lack of information about Kawasaki disease that prompted the Satiyas to develop an information website to help parents and doctors recognise the early symptoms so that treatment can be started before long term damage is caused.
Mark said that the Kawasaki Disease Foundation of South Africa (KDFSA) site received countless queries from people wanting to know more about the disease, many of them concerned parents trying to identify what was wrong with their children.
"We believe that this information is vital as there could be children in South Africa and elsewhere dying without being diagnosed."
Nicolas, who is now 13 and a healthy teenager looking forward to starting Grade 8 later this month, has since gone for two echograms to check his heart and fortunately there has been no damage to either his heart or arteries.
Kawasaki disease became high profile earlier this week following the sudden death of Jett Travolta, son of actor John Travolta and actress Kelly Preston.
Having been diagnosed with the Kawasaki disease when he was just two-years old, the question raised was whether the disease played a role in the death of the 16 year-old.
Dr Kogielambal Chinnia, a paediatricic rheumatologist at Chief Albert Luthuli Hospital said seizures are not a known complication of Kawasaki disease.
She explained that the disease is most prevalent in children less than five years, across all race groups and is rarely seen in children over 10 years of age.
"If untreated, patients may develop heart complications such as coronary aneurisms, which in serious cases may cause arteries to rupture or lead to the blood clotting. This could lead to a heart attack and even result in death."
Chinnia said cases of this disease are not documented in South Africa but the larger hospitals see between three to five cases a year.
While the cause of Kawasaki disease is not known it is diagnosed when children display a specific set of symptoms.
"The first sign is a very high fever that goes on for more than five days without the patient responding to medication.
"Other symptoms such as red eyes, swollen red lips, a rash over the body, a swollen tongue with spots on it, swollen hands and feet as well as swollen lymph nodes must be displayed before Kawasaki disease can be diagnosed," Chinnia explained.
Treatment needs to begin soon after diagnosis to prevent permanent damage of the arteries.
Chinnia agreed that not enough doctors know about the disease which could lead to misdiagnoses.