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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


Mariner-Borg Family

 

Written by Salome Mariner-Borg (2010)

Mason had a fever in November 2009. On the 3rd day of his 39-40 degrees temperature (omg!) I took him to the Emergency department to be told to go back home and continue with the Panadol but this time alternate with Nurafen. I knew that something wasn't right as they kept telling me it must be just some sort of infection - but hey, what would I know, they're the Doctors right?

I took him home and within 2 hours his glands started to swell up and I immediately took him back to the hospital - this time I was not going anywhere!

They kept him in for observations and of course his urine & blood tests showed that he has some sort of viral infection and just to keep him in overnight to keep an eye on him.

Over the next 4 nights Mason's condition worsened - he had swollen fingers and toes and his head even hurt so much he had to hold it with both hands when he moved due to the excruciating pain...my poor boy :-( His temperature was still doing the 39-40 degree thing, still on Panadol and Nurofen, his eyes were bloodshot, his lips and tongue were red.

By the 5th day in hospital I was getting really upset with the ward doctor as he just seemed like he had given up, saying that until they know what was wrong this is all they can do -wait.

Are you kidding me???...this is my child!...luckily, a senior Paediatrician was doing the rounds that day with the doctor and was shocked to see Mason - he immediately turned to the doctor and told him that he needed to take this a bit more seriously. The Paediatrician quickly had a look at Mason's symptoms and said - "I've seen this before -It's Kawasaki Disease and this child needs to get Gamma Globulin started asap!"

I felt relieved and worried at the same time not knowing what these things were - the nurses gave me a consent form for the blood product that they are about to order for Mason – the emotions going through me at that time were just overwhelming!

They gave Mason gamma globulin on the 8th day of his fever. There was a huge improvement within 12 hours. Mason was discharged 3 days later and had his 1st echo 2 days after that which showed an aneurysm was forming on his left coronary artery :-(

Mason had weekly echos for the next month to keep an eye on it and had to limit his activity including being kept home from school - which he was happy with..hehe...he was a great little soccer player and wanted to play for the Socceroos one day just like his cousin - Tim Cahill, so it was a really difficult time trying to get a 7 year old boy, who also has a twin brother to stop play wrestling, stop playing soccer & footy and just to do quiet things.

He is now on 1/2 aspirin daily and Warfarin.

We had an echo done on his twin brother Lleyton as I heard of a case in America of twins where the non-KD twin did not show any signs of KD yet when an echo was performed they found an aneurysm!...thank God Mason's cardiologist was amazing and was happy to check out Lleyton. I am pleased to report that Lleyton is ok - no aneurysm found...phew!

It has now been a year since Mason was diagnosed with Kawasaki Disease. He is back at school and he is a lot happier as he now knows how to control his body and the activities he can join in on.

We are committed to providing Mason with all the opportunities for an amazing future. He still has the aneurysm which is 9mm however Mason is such a champion, he has such a great attitude to having constant echos, weekly INR blood tests, stress tests, even those long MRI scans where he has to lay still for 1/2 an hour!..he is just so amazing and I am so glad that God chose me as his mum :-)