My View: Tot is fighting back from rare disease

Parents instinctively worry about meningitis but most will probably have never heard of Kawasaki disease and very few doctors will have seen a case, as it affects only eight in every 100,000 children in the UK.

The disease typically strikes children between the ages of six months and five years old. It was originally thought to be a troubling but non-threatening illness until research found it to be much more serious and it has now taken over from rheumatic fever as the most common cause of acquired heart disease in the developed world.

Diagnosing the disease can be a challenge because many of its early features mimic other more common fever related illnesses.

But delays in diagnosing the disease could result in the child having a fatal heart attack.

That’s why I was pleased to learn of a Doncaster mum who is committed to help fund research into, and raise awareness of, this potentially fatal disease after it struck her baby daughter.

Jo McBride, from Sprotbrough, set about researching all about Kawasaki after baby Freya – now two years old – was diagnosed with the disease at two months old.

Freya – the youngest of Jo and Gavin’s three daughters – looks a picture of health but her heart was damaged by the disease. She will take aspirin for the rest of her life and receive life-long follow-up care, including having a cardiac catheter angiogram this autumn to enable medics to plan her future care.

Freya’s experience led to Jo becoming somewhat of a Kawasaki disease expert after spending hours reading medical journals and striking up a friendship with San Diego based Professor Jane Burns, a leading international authority on the illness.

The youngster’s illness has been written up as a case study and medics have learned a lot from her condition.

This has prompted Jo to commit to raising money to fund research that she hopes will lead to a diagnostic test being developed to enable the disease to be identified at an early stage.

She has currently helped raise £85,500 for Cosmic, the UK charity that is carrying out the research, including £75,000 from a benefactor in Hong Kong.

At Jo’s request we have this month helped raise awareness of the disease among Doncaster’s GPs and will also share her information on our website and social media sites.

You can find out more about Kawasaki disease at Facebook Freya’s Story and you can support Jo’s fund-raising at: Kicking Kawasaki 2017