The UK Kawasaki Disease Foundation
Kawasaki Disease is the leading cause of acquired heart disease in children in the UK. It's time we changed that....
...together we will
My fundraising for Societi began with sweets!
We've packaged and posted T-Shirts to so many places! Every one raising awareness of Kawasaki Disease which I hope will help other families.
I looked at my beautiful little boy and said you are such a superhero, defiant, passionate with so much spirit and heart. That was how the Kawasaki Kid was created. A friend, who is a designer created the cartoon character for me. I have used this to create t-shirts and posters that are all over our town and further afield. I have sold over 100 t-shirts now to other parents with more orders coming. I have set up social media accounts to talk about our experience and this really helps me deal with what happened to our little boy but it also has helped to spread the message further afield. Our little cartoon character is even getting national media attention. It is so important to me to make this disease known I have to be part of it.
Kawasaki Disease has touched me in a way I never thought was possible. To have your child diagnosed with something that many know nothing about (including medics) is extremely scary. To not know what is happening to your child and to trust in your doctors when they are saying "it’s nothing to worry about"... but knowing there is more to it, is hard.
I’m glad I trusted my instincts and we got Reuben to A&E where he was treated relatively quickly.
I've sold over 100Kawasaki Kid T-Shirts to raise awareness and raise funds for Societi!
To learn of what could have happened is the worst thing about it and knowing there are families going through a future of uncertainty with the most precious thing in their lives is one of the things that has spurred me on to help spread awareness of this horrible disease.
The fact that Kawasaki Disease is the leading cause of acquired heart disease in children yet many have never even heard of it is something I want to help change and so my fundraising journey with Societi has begun.
It is very hard work, especially when people just associate the name with a motorbike (!!) but my little and often approach is working, slowly.
Sharing your story isn’t right for everyone, for some people it is too sad but for me it is one of the ways that I am coping and it is helping. I will be there when Kawasaki Disease is one the map and every parent and medical professional knows about Kawasaki Disease.
This is a disease where children have much greater chances of recovery if treated early and early diagnosis could have saved my little boys coronary artery and maybe our lives would be different. That didn’t happen but I have an opportunity to help other families.”
I've raised money for awareness with Tombola and car boot sales and have distributed Kawasaki Disease information to parents and the general public
Our lives have turned upside down because of this little known disease, Kawasaki disease. My beautiful little boy lives with two giant aneurysms on his coronary artery and we have to inject him twice a day. We have experienced a parents worst nightmare - the thought of losing our child. But we have come out the other side and while we have to manage Stanley and his condition we are doing OK, we are figuring out a new normal. I quickly became very upset by the fact so few, even medical professionals had heard of Kawasaki Disease. I live in a fairly big town in Hertfordshire, just outside London and not one parent had heard of it. That had to change. My thought was that even if this town knows about Kawasaki Disease then I can make a difference.
My hope is that one day everyone will have heard about it and can recognise the symptoms straightaway. Of course a world with no Kawasaki Disease in it would be even better - but we can’t work miracles x
If you're in need of inspiration to get you going on your fundraising journey, or perhaps you're new to fundraising - there's nothing quite like hearing first hand success stories of how it can be done to help you on your way!
Here are the stories of a few families who have been truly remarkable in their dedication and support for Kawasaki Disease awareness raising and fundraising for Societi -- and why; they inspire us and we hope they inspire you too.
The Kawasaki Kid! He is the real hero!!