Laura’s Story

My name is…

Laura

I am the mother/father of…

Josie

My child is … years old.

10

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…

I want to reduce the chances of families having to go through having a child left with a damaged heart.

How Kawasaki Disease affected my family …

Josie was diagnosed with Kawasaki Disease on 1st March 2018. Her diagnosis came after 5 days in hospital with doctors struggling to work out what was wrong. They ruled out many common illnesses and then suddenly one of the consultants pieced it together – just as ‘The Beast from the East’ hit! The team quickly got her the treatment and started heart scans. Within a week we were given the news that there was damage and within 2 weeks her consultant gently explained that it was unlikely the damage would get better with time and told us that her warfarin would be for the rest of her life. For a time we struggled accepting all that this meant. It felt like we wanted to wrap her in cotton wool, we angry and things she would never be able to do…she’d never be an astronaut was I remember saying out loud to a friend. Another friend explained that things would never be our normal again but we would find a new normal. So we set about trying to finding that. Josie takes medication daily, we test regularly, we see her cardiology team regularly and Josie takes every bit in her stride. Her younger brother doesn’t know any different and is known for telling people Josie has a poorly heart.

The thing I wish I had known is …

The symptoms were all there and I wish I’d know about Kawasaki disease in the way that I knew about the signs/symptoms of meningitis. Josie’s symptoms looking back were classic of Kawasaki Disease.

The advice I want to give parents is …

Ask questions to the doctors, find reliable sources of information. I found Societi website within hours of Josie being diagnosed and it really helped us through. We have also found given Josie’s age that we talk openly about her illness. Sometimes she asks questions about what if’s – she’s been known to take a list of questions to the cardiologist!

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

Finding Societi and connecting with other families has helped us work through everything Kawasaki Disease has thrown at us. We made a decision after Josie’s diagnosis that we would do all we could to raise awareness and raise money to help. We wanted not to dwell on the negativity of what it left us but use it to do something positive.