Aileen’s Story

My name is…

Aileen

I am the mother of…

Finlay

My child is…

5 years old

I want to help protect tiny hearts from the devastating consequences of Kawasaki Disease – the #1 cause of acquired heart disease in U.K. children because…

There needs to be more awareness of Kawasaki disease so that treatment can be done early, we saw multiple healthcare professionals that never mentioned it once after tests were done for multiple other viruses and other causes of rash. If we knew how dangerous it could be or if we had heard of Kawasaki before I would have pushed for that treatment earlier.

How Kawasaki Disease affected my family …

When Finlay was 3 years old he started to get unwell, complaining of a sore neck then a fever started. He developed a rash and sickness so we ended up in the children’s ward where he was put on a drip and different blood tests were done, then we were transferred to another hospital as he had stomach pains. We were kept in overnight then sent home after being told it was viral and would get better, but he just kept getting sicker and the rash spread over his whole body and we could not keep the fever down at all. He couldn’t eat or drink as his mouth was so sore so we went back to hospital and were sent home same night, again being told it was viral and to ride it out. We took him back for a third time, day 7 of being unwell, after he still had no improvement and it was torture watching him become so dreadfully ill. It was then that a doctor suggested Kawasaki disease and he was finally diagnosed then treatment was started. Myself and my husband had never heard of it before, and it was never mentioned as a possibility to us, if we hadn’t taken him back to hospital so many times the outcome could have been much worse.

The thing I wish I had known is …

That Kawasaki Disease existed and that it was a possibility for the symptoms Finlay was showing

The advice I want to give parents is …

Trust your instincts, you can be told something will get better in time but you know your own child best – don’t be scared to keep going back for answers if you feel things aren’t right.

Is there anything else you’d like to share about your experience of Kawasaki Disease?

It is scary and a long recovery process, Finlay was on steroids for a number of weeks after and had to have his vaccinations delayed, but it does get better!