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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


Cook-Dickinson Family

 

Written by Rebecca Cook-Dickinson

 

Ava was diagnosed last August. She woke up one morning and told me "Mummy my neck is sore", I thought it was odd as she was perfectly fine the day before. I took her to emergency where she was diagnosed with lymphadentitis. We were given antibiotics and sent home. She woke the next day with slight temps and a noticeable lump on the side of her neck, so we went back and she was put on a drip to get the antibiotics through her system quicker.

 

She was worse still the next day, the lump was now red and her temps were higher and she was becoming very cranky. She wouldn't take panadol or eat/drink. We were sent off for a scan on her neck, where it showed nothing, so we were sent off to Gosford hospital. The next two days her temps were in the 40's, she developed a measle like rash, her eyes were red and her lips started to bleed. My husband and I were panicking at this stage. My mum came in to visit on the Sunday (she's an RN) and she pushed for the pediatrician to come in and told him this child is not getting any better with these antibiotics, something else is going on. That's when the Dr told us we think it may be Kawasaki, an illness I had never heard of, all these questions where going through my head. They then started her on the ivig. Such a scary night for my husband and I as she was extremely ill at this stage and just simply laid there not moving or talking.

 

We spent the next two weeks in the hospital where she stopped eating, drinking, walking and even talking. She needed another dose of ivig as well as blood tests, drips and medication and nasal tubes. Such a busy time as we had our 18 month and 3 week old sons at home whilst we were tag teaming going back and forth to the hospital, but she came out of it in the end.
It probably took about 6 weeks after the hospital for Ava to be back to the way she was before. All of her scans have been perfect which I thank my mum and the medical team for their quick diagnosis and such fantastic care of our Ava. She has been perfectly healthy ever since!