Yesterday it was the annual UK National Kawasaki Syndrome Support Group (KSSG) Family Day; an event put on by the founders of the Group to provide the opportunity for families to come together to share the one thing that we all have in common; our lives have been touched (more like whacked) by Kawasaki Disease.
Freya and I, and my eldest daughter Eliza, travelled down to Coventry to attend the event; our first since Freya’s diagnosis. When the last event took place, Freya was just 22 days old and we were blissfully unaware of what would unfold a few weeks after that. At that point, we hadn’t even heard of the disease with the bizarre name that, whilst considered rare, is the leading cause of acquired heart disease in children in the developed world. And why would I have needed to know about it anyway? That kind of stuff didn’t happen to us; it happened to other people. It happened to the people that were at that family day whilst I sat at home gazing into the eyes of my beautiful, healthy, newborn baby. Wasn’t I lucky…
Who knew that one day, a little over a year after Freya was born, I would be attending an event with families affected by this little known disease.
Freya was diagnosed on Friday 12th June 2015. She was 63 days old. On a Friday 9 weeks prior, Freya was born in our local hospital. At 7 weeks, she developed symptoms of meningitis and went into septic shock. 13 days later an echocardiogram would secure a diagnosis of atypical Kawasaki Disease, after 2-weeks of drugs, tests and invasive procedures failed to provide any answers. Once we got the diagnosis for Freya – after the initial “Oh thank God it’s that! Never heard of that so it can’t be that bad!” – we took to the internet, and the mystery of Kawasaki Disease began to unravel, along with an understanding of the severity of the disease and it’s impact on the affected child. Even when they told us that Freya’s coronary arteries (the ones that supply blood to and from the heart) were severely dilated, I still didn’t appreciate the long term effect that this would have. I thought it was a side effect of the disease, that they would give her medicine, and that it would all go back to normal in a few days once the meds had their chance to work…
Luckily, this is true for the majority of children. Approximately 75% of children diagnosed with Kawasaki Disease will manage to escape any coronary involvement (although evidence is suggesting that these children do not escape all potential lasting effects from this disease). With fast treatment, the risk of prolonged damage to the heart is reduced from 25% of cases to around 6%. Freya received the treatment, but the damage to her heart continued to worsen. A second dose of the treatment didn’t stop the inflammation caused by the disease either, and so she was prescribed an infusion of a product called Infliximab made from the antibodies of mice that seemed to do the trick. Combined with the other treatment – the previously administered IVIG doses, high dose aspirin and intravenous steroids – the disease appeared to be stopped in its tracks, and it was time to focus on maintaining her condition. The rest has been documented in my blog posts along the way, and to cut a long story short, suffice it to say that Freya’s coronaries have started to remodel to within normal range. She continues to take aspirin daily for it’s anti-platelet effects, and she will undergo a procedure later (possibly June this year) to ascertain the cause of the remodelling (healthy or otherwise). But back to the main point of this blog post today…
The Family Day
I don’t know how many families attended, but the room was buzzing with the chatter of the families who did attend from the moment I arrived. I was greeted by one of the founders of the Group, Sue, who came and gave me a big hug and couldn’t wait to get a cuddle from Freya – they had met some months before and I joked that Sue was like a ‘baby whisperer’ as I hadn’t seen Freya quite so happy to have a cuddle before!
I took my eldest daughter too (my middle child, Finlay, decided that his friend’s laser birthday party was too good an opportunity to miss so he stated at home!) Looking around the room, I saw faces that were familiar from the profile pictures that you see popping up in the Support Group Facebook pages from time to time. I’m not going to name individuals because I don’t have their permission to do so, but it was lovely to chat to people who I’ve communicated with on different KSSG Facebook threads, as well as meet new people too. Some of the families had been to previous family days, for others it was there first time like me. Talking to the parents around the room, you got a real sense that this is something that sticks with you for a long time. Diagnosis dates ranged from months ago to years ago. I spoke to one gentleman who had to face this disease with his child 15 years ago. That’s before the internet had become as useful and saturated with information as it is now (and that’s saying something, because even now there is a dearth of useful information about the disease). We all shared our stories, all different but with some similarities. It felt good not to know that we are not alone.
As well as the informal chatter amongst parents, and the new friendships being formed amongst the children, some useful information was shared in relation to genetic research, and some developments about future projects to change the face of Kawasaki Disease in our country (also not for me to share here, but I am sure things will begin to unfold soon). The day seemed to whizz by in a flash.
The people who have been supported by the KSSG will have joined the Group at varying stages of their journey with Kawasaki Disease. Some have been members for years, others recently joined, like me. And everyone’s circumstances are different; some will have needed a lot of support from the Group, for others just the knowledge that there is someone there if they need them is enough. Those that have been dealing with KD for a number of years will have seen the group evolve over the last 20 years, will perhaps have seen new developments in the world of KD. For people like me, joining less than a year ago, much of those developments will already have happened before our time, and so we only know what we know now. And I’m sure there is so much more available to us now than there has been in previous years, but I think one thing that all of us in the Kawasaki family agree on is that there is still so much more that needs to be done to put Kawasaki Disease on the radar of medical professionals and ordinary people like you and me. There is most definitely an appetite for change, and there are plenty of people who are willing to support that change too. I imagine most, if not all of us, left yesterday feeling pretty optimistic about the future of the disease.
One thing that was noted was that looking around the room, you could not tell who was a sufferer and who wasn’t. Eliza (my eldest) spent a lot of the day chatting with a couple of lads around her age. I believe both boys have suffered with Kawasaki Disease and deal with the after effects of that illness today, but Eliza didn’t know it. They didn’t talk about it; they talked about ‘normal’ stuff – music and school and what they like to get up to in their spare time. Children with multiple giant coronary aneurysms ran around that Rugby Club alongside children that had never had a day’s illness in their lives. These kids are remarkable. They face regular medical check-ups, uncertainty about what lies ahead, some have had to stop doing things that they loved to do before all of this happened to them. And yet you wouldn’t know it to look at them; they’re made of strong stuff.
And Freya? Well, she crawled around happy as a pig in muck all day! And she was clearly inspired by the other children, as today she decided that she would take her first unaided steps and prove that she too was made of the same strong stuff as those other kids who share something in common with our little girl. Not Kawasaki Disease. That’s a given. They share the fact that they are extraordinary, in more ways than one.
Thank you to the KSSG for putting on the event, and to those that helped them to pull it all together. I didn’t take many pictures during the day as I was too busy talking (there’s a shock, lol!), so here is one of my daughter Eliza with the face paint that she did not want to take off!