Why I Keep Banging the Drum

There’s so much I want to say, I don’t even know where to start.  I guess I am writing this post today to try to help people to understand why I have been banging a metaphorical drum for Kawasaki Disease for more than a year now, and why I am unlikely to stop banging any time soon.  Perhaps if I could make you all understand why, you might forgive me when my blogs and posts pop up in your social media feeds, and maybe you might even help support me along the way.

Kawasaki Disease is a rare, childhood illness with no known cause and no diagnostic test.  Without a known cause, it is impossible to prevent children from being struck by the disease or come up with a test that will confirm a diagnosis within the ‘magic’ timescale for effective treatment.  The disease causes inflammation of all the blood vessels (veins, arteries and capillaries that carry blood through the body’s tissue and organs).  It is believed that there is a population that have a genetic susceptibility to the disease, and within that susceptible population there is another subset where heart damage is more likely to occur. In 25% of cases, the disease reaches a child’s heart and causes irreversible damage.  With treatment, currently high dose aspirin and a product called immunoglobulin, the inflammation can be stopped in its tracks, reducing the impact on the child’s heart, but that is considered most effective if the treatment is administered within 10 days.  And therein lies one of the biggest problems for our children – with many medical professionals having never heard of Kawasaki Disease, it is often diagnosed too late.  Sometimes not at all.  And even when it is, in some countries immunoglobulin is either not available, or just too darned expensive, so many kids go untreated.   

The symptoms of the disease present themselves like many other childhood illnesses, which poses another problem and leads to misdiagnosis in many cases.  Add that to the fact that not all of the symptoms appear at once, and sometimes not at all, and you can see why this is one that doctors are often getting wrong.  Freya was in hospital for 13 days before she received a diagnosis.  She was treated for sepsis and suspected meningitis, underwent countless blood tests and other invasive diagnostic tests, while the doctors scratched their heads and waited for the test results to confirm something.  While they watched and waited, the disease was taking its hold on Freya’s tiny body (she was 7 weeks old), and by the time we reached day 13 it had already taken hold of her heart.

When the coronary arteries become involved, the inflammation can cause areas of the artery to balloon out – that is called an aneurysm.  There are different kinds, but I don’t want to bore you too much with the science.  Coronary aneurysms do not generally occur  (if at all) in children.  They are usually the result of heart disease caused by a build up of fat, cholesterol and other things not usually associated with young children.  In the best case scenario, the aneurysms will reduce over time, and the arteries may even appear normal.  It is worth noting, however, that these arteries will never in fact be normal, and the child will be subject to long-term monitoring and/or medication in order to prevent further complications.  The most dangerous risk associated with coronary aneurysms is rupture, where the wall of the artery cannot take any more stress and bursts –  game over.  Other risks include blood clots, which can lead to heart attack, and narrowing of the arteries as a result of built up layers of blood or scar tissue.  In both cases, narrowing restricts the flow of blood to the heart, which can also cause a heart attack.  Girls who have sustained coronary aneurysms as a result of KD  will have to be monitored by a Cardiologist through pregnancy and childbirth – just one example of how this disease affects the future of a child who has suffered.  Approximately 75% of cases where the heart has become involved will go on to require intervention in later life – a stent, bypass, or a transplant for example.  Kawasaki Disease is indeed the gift that keeps on giving.

Why do I need to tell you that?  To be honest, I don’t think any amount of words could help me to get across the impact Kawasaki Disease has had on my life. I need you to know that this disease exists.  I need you to know the symptoms so you might recognise them in your own child if they become ill (http://www.nhs.uk/conditions/Kawasaki-disease/Pages/Introduction.aspx).  I need you to appreciate that until the cause is found we cannot protect the world’s children from the disease.  I need you to know that this disease is crafty and insidious – in the same way that it creeps into the child’s life, it remains there, barely seen and in many cases sticks around for life.  These children, children like Freya, do not outwardly wear the scars of Kawasaki Disease.  On the outside they look like any other kid.  They laugh, run, play, act up, and mostly they look the picture of health.  I am glad of that, but if I am honest I also find it frustrating, because if Freya looked a bit more like a victim, was weak and fragile and vulnerable, we might get more support in our fight against Kawasaki Disease.  

There are research teams dedicated to finding the cause of the disease, and changing the future of KD forever.  But research costs money.  Doesn’t everything?! But before you switch off because you think I am about to make a plea for your hard-earned cash, let me tell you that this post isn’t about asking you for money.  There are organisations in the world that have the means to change the future of all disease, KD included.  I know that unless you have been personally touched by critical illness, you are unlikely to feel the intense pressure I feel to be part of that change in the world.  I know that there are over 6000 rare diseases in the world, and that Kawasaki Disease is just one of those; why should that be more important than the others? It isn’t more important generally, I get that, but it is more important to me and the millions of parents who have watched this disease change their child forever.  I have contact with parents and grandparents whose own lives were changed forever by Kawasaki Disease when it took the lives of their children.

I am sat here crying with sheer frustration that I cannot change this.  I’m not talking about reversing the clocks for Freya; I can’t change the past.  I’m talking about making enough of a difference to the landscape for KD that it cannot be allowed to take the life of another child because it went unchecked and unnoticed.  When I think about how many more children will suffer as Freya did I feel suffocated, the bile rises up from my stomach like gnarled hands that clench my throat from the inside.

And that is why I share Freya’s Story.  I first started the blog as a hand-written journal whilst we were in the hospital last Summer.  It kept me sane, helped me to remember the details that would help me secure the best possible care for Freya.  It was at times my way of looking forward to an uncertain future, to a time when Freya would read all about adventures she would most likely forget.  At times, I thought she would never get to read it, that she wouldn’t make it.  Her story means that more people know about the disease than they did before.  It has offered hope to parents, and provided information to help others be an advocate for their child.  It has provided parents with an outlet; someone who understands how this feels.  At best, it inspired a gentleman to donate £75,000 to the research program, and Freya’s own birthday party raised £8000 thanks to the huge community spirit that enveloped us at that time.

All of these are reasons why I keep banging the drum, and will continue to do so.  I am sorry if you get frustrated with me clogging up your newsfeed.  I hope you don’t.  I hope you can see that the reason I feel so compelled to put so much effort into raising awareness and supporting the fundraising campaigns, is because if I can’t turn this into something positive, if I can’t make a difference, then this happened to us for nothing.  Nothing.  That just isn’t an option for me.

I have already seen how much of a difference we can make just by sharing our story and raising awareness – the £83,000 raised in Freya’s name is worth double that due to the Macklin Foundation Challenge Grant.  That grant will see a cash injection of $5 million into the research effort, provided we raise half that amount.  That could be enough to solve the mystery of Kawasaki Disease.  Dr Tomisaku Kawasaki is the Japanese paediatrician who first discovered Kawasaki Disease in the late 1960’s.  He is now 90 years old, but is dedicated to the belief that the mystery might be unravelled in his lifetime.  I sure would like to see it solved in mine.  He has written to the Chan-Zuckerberg Initiative (https://chanzuckerberg.com) asking for consideration as part of their $3 billion pledge to rid the world of all disease.  

So here comes the ask….

There is a petition to accompany Dr Kawasaki’s letter, and we’ve got until the 15th November 2016 to get as many signatures on that petition as possible to add some weight to the request.  I would really like all of my friends to sign the petition and share with their friends.  If you don’t want to sign it yourself, please just share the link so that others can be given the choice to do so, it would mean so much.  It takes just a few minutes to sign – open the link, fill in a few details, and hey presto! it’s done.  You won’t get a load of emails in your inbox either – just the one confirming receipt of your signature.  I have 500 friends on Facebook.  If I could get each and every one of them to sign, and they did the same, that could amount to 250,000 signatures on that petition.  For me, it feels like so much could be achieved from so little – you can read the case being put forward, and sign the petition here:

https://www.gopetition.com/petitions/kdresearch.html

You may remember me making a similar request to sign a petition last year.  That petition was started by the UK Kawasaki Disease Support Group as a means to raise awareness of the disease. Your support in that meant so much.  I cannot tell you how much faith I have in this petition from Dr Kawasaki – it literally has the potential to make a real difference in the world, and I for one am proud to say that I might be a tiny part of that.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”  (Margaret Mead)

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P.S. I mentioned earlier that I wasn’t going to ask for money.  For the purpose of this post that is true, but please know that medical research is grossly under-funded and relies heavily on philanthropy.  So I will continue to do what I can to raise money for the KD Research Collaboration, and will share the information so that you might too if you feel so inclined.  You can donate via the KD Foundation website (US) here – http://www.kdfoundation.org, or via UK charity COSMIC directly or via their fundraising page, below:

http://uk.virginmoneygiving.com/charity-web/charity/displayCharityCampaignPage.action?charityCampaignUrl=KawasakiDiseaseResearch

 

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