Today is Kawasaki Disease Awareness Day.
I hadn’t heard of Kawasaki Disease until Lucy from The Kawasaki Kid contacted me a while back, and I’m really glad she did. Recognising the symptoms could be the difference between life and death for your child and if caught early enough the affect it has on your child can hopefully be reduced.
I asked Lucy if she would share her and her gorgeous son Stanley’s story here, so more of us can understand what to look out for and what living with Kawasaki looks like for the children who have it.
‘Kawasaki Disease – a disease as a parent we all need to know about. It’s a repulsive disease that disguises itself as so many other childhood illnesses. Like fire it inflames your perfect child’s blood vessels and works its way to the coronary artery and causes irreparable and life-long damage. My now three-year-old little boy lives with giant aneurysms on his coronary artery because of Kawasaki Disease and every day we live in fear of him having a heart attack. If it had been recognised earlier, if more people knew this disease, it is likely this would have been prevented.
I spend my time now raising awareness and money to help raise awareness for this horrible disease. We created The Kawasaki Kid, based on my little boy, and it has helped create a platform to build awareness from. I cannot bear the thought of another child becoming sick because of not knowing, another mother’s heart broken. You need to know the signs to have the confidence to ask your doctor ‘what about Kawasaki Disease?’ if your child is sick.
I wish I had, I wish I had known.
It is not a rare disease.
It is an unknown disease with cases increasing fourfold in the UK in the last decade.
It is he leading cause of acquired heart disease in children in the UK.
In June 2017 my beautiful, perfect little Stanley got poorly. Kids get poorly.
We were told it was just another virus.
We went back to our local GP three times with Stanley before he was sent to hospital.
We were told he didn’t have meningitis and I breathed a sigh of relief. Nothing can be as bad as that right?
Unfortunately we quickly learned that wasn’t the case. It wasn’t until we had spent a week in our local hospital and been referred to the Royal Brompton (a cardiology hospital) surrounded by cardiologists and nurses that we were told he had Kawasaki Disease and I realised ‘ok this is bad’.
From that moment, it was a whirlwind, it was as if I was outside of my body looking down at the events unfolding.
After an echo at the Royal Brompton things got very scary very quickly and instantly Stanley was admitted to the Paediatric Intensive Care Unit (PICU). We were surrounded by doctors and nurses saying lots of scary things.
After further investigation the cardiac specialists revealed he had two giant aneurysms and believed there was a clot. They wanted to start immediate treatment with a clot busting drug called TPA that has some scary side affects.
It was the most frightening time of our lives, but the journey had just begun.
Fortunately we got to bring Stanley home. However, he is still not a well, normal little boy. To look at him you wouldn’t know what is going on inside his little body. He has two aneurisms that may or may not reduce in size – we just have to wait and see.
He has had some awful things done to him that no one should have to endure.
He will be on blood thinners for the rest of his life and monitored every week by cardiologists.
Every day, twice a day, we have to administer injections as well as three other types of oral medications.
Every time I have to put the needle into my crying child, my heart breaks.
And over his tears all I can say is ‘I love you, I love you, I’m sorry, I’m sorry. This is your lifeline little boy, this is keeping you alive’.
We will get used to injecting our son and Stanley’s tears will start to fade as he starts to get used to the feeling of the needle piercing his skin. My heart will still break but I will be fighting like a warrior to make sure he has a normal life and to raise awareness of this horrible disease in the hope that one less child will have to suffer the way Stanley has.
Every day I ask myself how I didn’t know what was going on. I question my mother’s intuition and why I just accepted the diagnosis of it being ‘just a virus’. I should have know. I should have seen something. I should have know that this horrible disease was slowly taking hold of my son’s arteries.
Most evenings now I spend researching. I watch videos, read papers, read new findings, talk to other families who have been affected by Kawasaki Disease. I cannot let it go. I cannot just sit back and accept our fate.
We have to know more and get some answers.
I have to help find out how and why this happened, and more importantly what may happen next. I want to raise awareness and money for new research that will help other children. I think about it in every restless moment, as soon as my mind wanders this is where it rests. Turning and turning over and over, with ideas, with plans, with questions.
I am a very different woman from the woman I was seven months ago. I try to be sunny with what I share to the world and I try to show the world that despite the card we have been handed we are getting on with life and loving each day. Mostly this is true, we are doing a pretty good job at just getting on and enjoying life. But, if I’m honest with myself, I live with a broken heart much like my little boy’s. In time, mine will repair as we become more and more used to our new normal. The same cannot be said for Stanley’s.
We have great days, filled with laughter and silliness and pure sunshine. And then we have the other days. Days of hours spent in hospital waiting rooms, of panic, despair, pain, heartbreak, blood, needles, bruises, nights in uncomfortable hospital chairs, of not knowing, of fearing your worst fear, and of many, many sleepless nights.
The thing that equalises us all as humans is our health. Illness is not personal, it doesn’t target you. It doesn’t matter if you’re rich or poor. If you get sick, you get sick.
So despite the fact I feel these things sometimes and I may feel a little broken that my boy got this horrible disease, there is no point in me feeling sad, or sorry about our situation. It doesn’t help.
All I ask for every day is the strength and courage for me and my boys to carry on smiling, for us to be brave and bold, to continue to have fun and basically give Kawasaki Disease a big, massive fuck you!’
Signs and Symptoms
The symptoms to look out for are blood shot eyes, a body rash, red palms or soles or feet or swollen hands or feet, strawberry tongue and red, cracked lips, swollen lymph nodes and a fever.
The quicker Kawasaki Disease is diagnosed the higher the chance of effective treatment.
You can find out more information at Lucy’s site The Kawasaki Kid or the Kawasaki Disease Foundation.