Kawasaki Disease UK calls for urgent national awareness as children continue to be discharged without lifesaving treatment.

Kawasaki Disease UK is raising the alarm after another young boy, Emmanuel, was recently misdiagnosed despite displaying classic symptoms of Kawasaki Disease (KD) also known as the leading cause of acquired heart disease in children. His case follows a pattern seen more frequently: children sent home while their condition worsens, despite red-flag symptoms being present.

This comes after the near-tragic case of William Hutchinson, whose mother, Harriet Hutchinson, describes a week-long battle to be taken seriously as her son deteriorated with persistent fever, neck stiffness, cracked lips, bloodshot eyes, and an inability to walk. Although Kawasaki Disease was mentioned at one stage, it was dismissed.

It was only when Harriet and her GP contacted Kawasaki Disease UK directly that they were urgently connected with global KD expert Professor Michael Levin, who confirmed the diagnosis and ensured William received immediate treatment.

“Undoubtedly, without the advice myself and my GP received, we would not have got William the care and treatment he needed before his situation got worse.” – Harriet Hutchinson

This is why awareness remains critical. While public figures such as John Travolta, Bryan Littrell, Mrs Hinch, and Scrubs actress Sarah Chalke have spoken openly about their children’s experiences with Kawasaki Disease, awareness still falls dangerously short of where it needs to be, leaving too many families vulnerable to delayed diagnosis.

This can be detrimental and not every child survives long enough to be diagnosed. Grayson died in 2019. His Kawasaki Disease diagnosis came only after his death, confirmed during a post-mortem examination. His mother, Eden, never received answers while he was alive but Kawasaki Disease UK supported Eden with £1,000.  This is an example of how Kawasaki Disease UK provides practical, life-saving support, emotional guidance, expert medical signposting, and direct financial assistance for families. Another parent that had financial support said:

“I never imagined needing to apply for a grant, but Kawasaki Disease UK truly came through for us when we needed it most.” – Gemma Gill

Even with this financial aid it struggles to cover the number of growing cases: Jane’s grandson developed Kawasaki Disease in 2021 at just 2 years and 6 months old, spending over three weeks in hospital fighting the condition. The charity was also contacted by another parent, Cindy Flower, who described being discharged once again while her child continued to show KD symptoms. Clinicians refused to consider Kawasaki Disease because her child had not reached a temperature of 38°C and would not contemplate a cardiac ultrasound unless KD was formally diagnosed.

Her confusion and fear echo what the charity hears daily from parents. Carla Plummer’s son Billie was just three months old when he was initially sent home from A&E. His condition deteriorated rapidly.

“Watching my baby so little and so unwell was heart-breaking. Kawasaki Disease UK’s support meant more than I can put into words. Knowing someone understood what we were going through made all the difference.”

Kawasaki Disease is often misunderstood as a childhood-only illness, yet adults are being diagnosed too, often late and with severe consequences.

Rebecca, diagnosed in July 2024, describes the profound impact on her life:

“It has been a very life-changing medical condition. With all the scans, testing, and medication to find out what works, it is mentally, physically, and emotionally exhausting. Fatigue is constant.”

Doctors found three aneurysms in her heart, two of significant size. Rebecca continues to struggle to access appropriate support and a community that understands adult Kawasaki Disease, which remains poorly recognised and under-supported.

Dr Matthew Etika, Kawasaki Disease UK, said:

“We continue to see the same heartbreaking scenario: parents know something is wrong, but their concerns are dismissed until their child becomes critically unwell. Kawasaki Disease is time-sensitive, and delayed treatment can lead to lifelong cardiac complications. Awareness is not optional; it is lifesaving. Kawasaki disease (KD) is often missed because its symptoms can mimic other common childhood illnesses. Classic features include a; persistent fever (usually 5 days or more), red eyes (conjunctivitis), changes to the mouth such as red or cracked lips or a “strawberry” tongue, and swollen glands in the neck. A rash and swelling or redness of the hands and feet may also be present.

If KD is suspected, ask the GP for an urgent referral for an echocardiogram (heart ultrasound), as
early diagnosis and treatment are crucial to prevent serious cardiac complications.”

Misdiagnoses are rising, yet despite this, many clinicians still lack sufficient training to recognise Kawasaki Disease quickly, even though treatment must be given within 10 days of symptom onset.

This is something Dee Izmail knows all to well. Even using her legacy as a designer, best known for her work for the Spice girls, she creates pieces inspired by the disease to help raise awareness for the illness. Dee went on to become a founder of Kawasaki Disease Uk and said:

“After my own daughter was misdiagnosed and left with lifelong complications, I campaigned to remind physicians of how important it is to promptly get kids into ultrasounds once detecting at least three of six classic symptoms of KD.

New medical reports and approved global research files are available on our website, kawasakidisease.org, for parents and physicians.”

Kawasaki Disease is not rare, awareness is. Emmanuel is just the most recent case in a much larger medical blind spot. With timely treatment, most children recover fully. With delays, the consequences can be lifelong or fatal. How many more names must be added before “I didn’t know” is no longer accepted?

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