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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


“Harry’s Story”

by

Glenn & Michelle Williams

In mid September 2011, shortly after competing in a local swimming meet, our son Harrison, who at the time was eight years old, fell terribly ill. We reported to Wyong hospital emergency with the following symptoms, sore neck, a high temperature, a severe rash, his lips and eyes, bright red. After a number of tests and monitoring through a twelve hour period, the medical staff at Wyong hospital were unable to diagnose Harry’s illness and subsequently could not provide treatment. We went home overnight where his condition got gradually worse.

We presented back to Wyong hospital the next morning and after another twelve hour period we requested that Harry be sent to Gosford hospital where we knew Harry would be under a paediatric specialist. We arrived at Gosford that evening, where Harry was monitored with his symptoms continuing to get worse.

The following day, Harry’s skin was starting to peel, his temperature was constantly high, he started to turn yellow which indicated that he had issues with respect to his liver. We were fortunate to have Dr James Hong as Harry’s paediatrician. After discussions with other specialists in Sydney’s Westmead Children’s Hospital and five days of being severely ill, Dr Hong diagnosed Harry with Kawasaki disease. He was then treated at Gosford hospital with immune globulin.

Unfortunately Harry didn’t respond to the initial treatment and he was sent to Westmead Children’s Hospital by Ambulance the following day.

Under the care of a number of medical specialists in intensive care, the next five days were extremely difficult for Harry and us. Harry’s liver almost shut down and the long nights of severe pain and high fevers for Harry were terrible to witness. After a large number of tests including those for infectious diseases, it was confirmed that Harry had Kawasaki Disease. His second treatment of immune globulin was administered.

It took a day for Harry to begin his recovery and a further two days of monitoring which included a number of visits to the paediatric cardiologist.

Harry was then transferred back to Gosford hospital for rehabilitation. Five days later, after three weeks in three different hospitals, we took Harry home. We recall vividly having to take him to the car in a wheelchair as he was so emancipated that he could not walk himself. At the end of three weeks Harry had lost around 90% of his skin from his body and all his finger and toe nails. He also lost around a third of his body weight.

Harry did not return to school in the last term of the year and he spent around three months recovering. After a number of visits with his paediatrician, Dr Hong, which included weekly blood tests and further checks with the paediatric cardiologist, there was no indication of damage to his coronary arteries as a result of the disease.

In late March that year, six months after contracting the disease, Harry competed in New South Wales Primary School Sports Association State Swimming (NSW PSSA) Championships at SOPAC after winning a gold medal at Combined Independent Schools (CIS) State Championships.

This year, Harry represented NSW at School Sport Australia Swimming in Adelaide, winning a number of individual and team medals.

We know we are extremely fortunate as a family to have come through the experience with no ongoing effects. We hope that in sharing our story, it will assist other families in their personal journeys.

http://www.youtube.com/watch?v=TTl2oVU7Rkg&feature=youtu.be