Natasha’s Story

My name is…

Natasha

I am the mother of…

Caleb

My child is…

4 years old

I want to help protect tiny hearts from the devastating consequences of Kawasaki Disease – the #1 cause of acquired heart disease in U.K. children because…

There needs to be more awareness of Kawasaki Disease so that treatment can be given early. We were wrongly diagnosed by multiple doctors prior to reaching the hospital. One amazing nurse was able to tell us straight away why our son was so poorly. If we knew what Kawasaki Disease was and how dangerous and life changing it could be, we would have pushed for answers and medical attention quicker.

How Kawasaki Disease affected my family …

Caleb was taken poorly with a high temperature of 40 and a sore throat. After two days and no improvements, I decided to take him to the out of hours doctor who told us it was likely to be Scarlet Fever and gave us a course of anti-biotics. After another 48 hours of a high temperature and symptoms getting worse, his lips were cracked and sore, his tongue was very swollen and he had a huge lump on the side of his throat. His eyes were all red and I knew that this was more than scarlet fever, so decided to go back to the GP for advice. I spoke to a doctor who didn’t know what was wrong and told us to go to the hospital. Once we got to the hospital the nurse helping us told us it could be two things – either Sepsis or Kawasaki Disease – things moved pretty fast after that, with our son being admitted to the children’s ward, receiving two IVIG infusions and an echo scan of his heart.

We are few months on now and Caleb has had his final heart scan, thankfully he has not been left with any lasting damage to his heart and it’s recovering really well. He’s back at school and playing football after taking some time off to rest and recover.

It’s been a long few months filled with worry and anxiety but we are just so grateful Caleb is well and healthy again.

The thing I wish I had known is …

I wish the medical professionals we had seen had been better informed so that we were not wrongly diagnosed.

The advice I want to give parents is …

If you think something isn’t right act quickly and trust your gut, you know your child better than anyone else.

Is there anything else you’d like to share about your experience of Kawasaki Disease?

This disease is like nothing I have ever experienced, it can act a lot like other diseases. The road to recovery is a long one. We just have to take each day as it comes.