Monday 26 January 2015

KDAD... a day to remember...

Today is a day that in many ways I wish I didn't know about... I only know about it because we have, in the past two years, come face to face with it in a most life-changing, unexpected way...

In other ways, I wish I had known about it just a little earlier... I don't think the "what-ifs" will ever quite go away. Perhaps if I had known about this day, the events of the past two years might have transpired somewhat differently.

Today is Kawasaki Awareness Day.

Kawasaki Disease is a rare condition about which relatively little is known. It cannot be prevented and is difficult to diagnose. It is therefore one of the most dangerous childhood illnesses... particularly as it heads straight for the heart. There are many theories about what causes this disease: but two things are certain... it is not hereditary, and it is not contagious. You cannot possibly see it coming...

It is therefore absolutely vital that people know what to look for.

Medical experts suggest that if two of the above symptoms are present, alongside the fever, then the alarm bells should be raised. There is no test for KD, so diagnosis is possible only as a result of affective treatment.

When Heidi was diagnosed at 11 weeks old, she was 15 days into the illness, and consequently the diagnosis came too late for her little heart. Ideally, diagnosis should take place between days 5 and 10, and if this is achieved, there is a good chance that no permanent damage will have been done to the blood vessels surrounding the heart.

KD usually affects children between 18 months and five years, normally boys and often of Asian descent.

Our Heidi was a nine-week old baby girl of European descent who presented with only a rash and fever. She did not tick the boxes above, and therefore took a lot longer to diagnose. She had cracked, bleeding lips for the first day of the illness... I'm not sure I even told the Doctors that. Had I been informed, and known the symptoms, perhaps I could have raised the alarm.

Of course, in all this, we have learned to throw ourselves fully on the sovereignty of God. I do not think I could bear the "what-ifs" and "if-onlys" otherwise. In time, our little girl will have to learn to do likewise as she lives with the long-term consequences of this disease.

Please be informed. Please read up the information. Please spread the word. I don't want to scare-monger or worry... it is so very rare (8 in 100,000 cases in the UK per year, only 5% of which have long term consequences), but when your daughter is one of the 5% of the 100,000... you want to make sure no-one else ever has to go through that. If more people are informed, perhaps we could do this disease some damage and stop it attacking little hearts across the world.

...Please join me in raising awareness today and share this post across your social networks...


  1. Thank you for sharing, and for your courage in doing so. Praying for you today. God bless

  2. Great post Claire. Out of our darkest moments and trials, God can bring great hope. You are raising awareness of a disease you weren't aware of 2 years ago and in doing so, it will no doubt help others.

  3. The what ifs are always the things that make us heavy hearted, but you have hope and you have faith and you have Heidi and somewhere in all of that there is a plan bigger than all of us xx


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