Lorna’s Story

My name is…

Lorna

I am the mother/father of…

Tully

My child is … years old.

6

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

4 years on they are now querying my son’s diagnosis. I want to ensure that all children are diagnosed correctly, if that’s Kawasaki or another disease.

How Kawasaki Disease affected my family …

We had months of illness which culminated in a lengthy hospital stay and several queries over diagnosis. We have spent the last four years fighting for answers due to extension of symptoms (non cardiac) and feel like my son has been let down by the system.

The thing I wish I had known is …

Other conditions also like Kawasaki that can present in the same way, and to believe and trust in my own instincts. To have the confidence to question the medics and to have been aware of Kawasaki.

The advice I want to give parents is …

Always trust your gut, we know our children better than any medical practitioner. We cannot diagnose but we can have confidence in knowing that we know our own child. Have faith and speak out.

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

The Kawasaki Support Group UK has been a lifeline for me, also Societi as a charity constantly battling for answers and awareness raising.