Thanks for taking the time to visit my JustGiving page.
June the 26th was the day my healthy and active 8 year old son first got a high fever which I thought was the start of a normal virus. After day 3 a rash appeared and like many parents would I thought meningitis and did the glass test however the rash faded. I breathed a sign of relief however also started to get the gut feeling that something was seriously wrong and it didn't feel right. After 5 medical assessments either at the GP or at our local hospital we kept being told my son had a viral infection and was prescribed antibiotics.
Neeyan was not getting better in fact he was getting worse and my world turned up side down when he was rushed in to emergency with a heart rate of 230 and an open diagnosis
It was the next day when our consultant first spoke the words "Kawasaki disease" I had never heard of this before and was I never prepared for what was about to unfold over the next 14 days. With Kawasaki disease there are no blood tests and a clinical diagnosis was made based on the symptoms that Neeyan presented with which were high fever, rash, lethargic, arthritis (Neeyan couldn't even walk), Swollen glands and extreme irritability plus so many more......
The main priority was to reduce his fevers and save his heart from damage. I was happy that a treatment plan was in place and I trusted my gut and we had a diagnosis within the 10 day window.
I thought we were best case scenario right? No!!!! Neeyan became resistant to two doses of IVIG and needed more aggressive treatment as they couldn't control the inflammation as this disease managed to find its way through Neeyan body and Kawasaki disease was not content until it had damaged Neeyan's heart.
To be told I have no choice but to change the treatment plan was pretty tough to deal with how could I not have a choice when I live by my choices in work and at home every single day but I had no choice except to trust the medical team to save Neeyan's heart from any further damage.
Neeyan needed high dose metha predisional and then Infliximab to finally halt the inflammation however despite my best efforts even I couldn't save Neeyan heart from being damaged. When Neeyan heart broke my heart also broke too. Neeyan coronary arteries had dilated to 4mm at the time and currently has to take Asprin every day to prevent his blood from clotting along with regular echo's on his heart as follow up. Neeyan will be under long term surveillance for life now to keep an eye on his heart. It's not fair that Neeyan has to go through all of this at such a young age however he is so brave and strong and is my HERO
Now I am on a mission to raise as much awareness as I can to save another child heart from being damaged. Kawasaki disease is not rare and the numbers are increasing year on year here in the UK however hardly no one knows what this disease is despite it being the Number 1 cause to AQUIRED heart disease in the UK. How????
My awareness campaign will never stop as I just cant until we know what causes Kawasaki disease as I am convinced once they find the cause they will also find the cure and I want to know why Kawasaki disease chose my son in my life time and I wont rest until I know.
Society and KSSG are both volunteer funded and are also fighting for more awareness of Kawasaki disease however they are also fighting for UK protocols so there are no more misdiagnosed cases along with clear guidelines for the UK for diagnosis and also long term follow up care.
Kawasaki disease is more common than some types of meningitis however everyone knows of this yet no one knows of Kawasaki disease and it is time we changed that and got parents and the medical professions all knowing the symptoms and thinking of Kawasaki disease
Thank you for visiting my page and I am very grateful for any donation to help me save another heart from being damaged by this mystery illness that had puzzled doctors for over 50 years!!
Help me be apart of that change and also to be apart of the team who will one day eradicate this awful disease so no more children's hearts are damaged.
Any donations on Just giving will be given to Societi however off line funds will be given to the UK Kawasaki support group who have been my rocks since Neeyan got diagnosed and now its time for me to make a difference in supporting them.