Reuben was diagnosed with Kawasaki Disease (KD) in February 2017 after a week of developing symptoms and visits to various health professionals near enough every day! Doctors were treating him for Scarlett Fever but he was getting worse not better and at the end of the week even with all typical KD symptoms present it was still not picked up. Feeling utterly helpless, we took him to A&E. I knew there was something more to it and I needed someone to help my little boy. Luckily he was seen by someone who did suspect it and admitted him straightaway. After a day of tests and observation he was given treatment (IVIG) which he thankfully responded well to (not the case with all children).
Early diagnosis & treatment is key to a better outcome so we were very lucky to get Reuben in when we did and seen by someone who had seen it before. Of course, I did not know any of this at the time. It is only since getting in contact with other KD families, researching and finding Societi and the support group (KSSG) that I have learnt of many harrowing stories and discovered what KD actually is (to a certain degree – there is still so much unknown about the condition, even within the medical profession!). There are many children who go undiagnosed or misdiagnosed for some time and end up with lifelong heart complications which is the most shocking thing about all of this. Kawasaki Disease is the leading cause of acquired heart disease in children – how do people not know about it?!?!
There is also a lot of unknown with follow up care and as there is no standard protocol to follow, it varies throughout the country (something which Societi are also working to rectify). Although Reuben's last heart scan was "fine" it is still a huge worry as to what the future may hold. He won't be scanned again for 5 years (5 years, that's a long time!!) – do we just plod on until then assuming all is ok?? KD doesn’t just disappear either, it lives with you every day, every sniffle, every cry. The irritability stays, those typical terrible two tantrums seem much worse, could be coincidence but many KD children seem to suffer with this as a long lasting side effect as well as random skin peeling and of course the worry of it coming back – even rarer but there have been a few cases recently of children getting it for a second or even third (!) time.
For me it is all about awareness now and getting Kawasaki Disease out there. I can’t even begin to explain what that week was like, not knowing what was happening to my little boy and for many it is much much worse and goes on undiagnosed for weeks. The fact that it can lead to lifelong heart complications or in some cases fatality is what scares me the most. This could so easily have been us, we were extremely lucky.
And so my fundraising journey has begun. I am working with Societi, the UK Foundation for Kawasaki Disease, a charity which was founded by a fellow KD Mum to make all of our “society” aware. The more people that know about this, hopefully the more hearts we can save.