My daughter’s rare Kawasaki disease was spotted just in time | UK News

The mum of a toddler diagnosed with a rare disease has called for greater awareness of the condition among parents.

Ashleigh McGeogh’s two-year-old daughter Delilah was diagnosed with Kawasaki disease – a condition that is the leading cause of acquired heart disease in UK children – after 10 days of illness.

She was told by doctors that the condition could have become extremely serious if it had been spotted even a day later.

Now the Paisley mum is hoping other families can learn about the disease and spot possible symptoms.

Kawasaki disease – named after the Japanese paediatrician who discovered it, Tomisaku Kawasaki – causes blood vessels to become inflamed and affects about eight in every 100,000 children.

However it can be a difficult condition to spot as several of the symptoms – such as a rash and a high temperature – can easily be mistaken for other viruses.

“It is unbelievably hard to diagnose,” says Ashleigh, 31.

“The problem is the symptoms mimic other viruses, so it’s easy to think that they have something else, just a cold or being run down.”

The first sign of illness was when Delilah’s temperature shot up on 2 July last year, and remained that way for several days.

Medical research states it is important for a child to be diagnosed with Kawasaki disease and begin treatment as soon as possible, ideally within the first 10 days of the fever appearing.

Delilah was diagnosed exactly 10 days after her temperature started rising.

Without treatment about one in four children with Kawasaki disease get heart complications. This can be fatal in about 2 or 3% of cases.

However treatment for the disease involves taking intravenous immunoglobulin (IVIG) – a solution of antibodies. This can cause complications in children, meaning doctors wanted to rule out any other illness before diagnosing Delilah.

“There isn’t a test for it and the treatment can have risks as well, so they can’t start giving it to young children unless they absolutely know it’s Kawasaki disease,” explains Ashleigh.

That meant Ashleigh and her husband Robert had to watch as their daughter suffered a range of symptoms.

“She had all of the symptoms, they came one after the other,” said Ashleigh. “The high temperature came first, so I took her to the doctor and they thought it might be tonsilitis so gave her antibiotics.

“By the Saturday she was getting worse and started getting golf ball sized lumps on her neck, so I took her to hospital.

“She was also dehydrated and they thought it was a lymph node infection. They sent her home with antibiotics and some apple juice to drink.”

Ashleigh stressed she did not blame doctors at Glasgow’s Royal Hospital for Children for not diagnosing Delilah’s condition faster.

She believes it simply shows how hard it is to be sure a child has Kawasaki disease.

Delilah’s other symptoms included bloodshot eyes, swollen fingers, skin peeling off her hands and feet, a rash, cracked lips and a swollen, red, bumpy tongue – known as strawberry tongue.

“On the Monday she was really unwell and was admitted to hospital,” says Ashleigh.

“It was just one thing after the other. When she was admitted to hospital they mentioned Kawasaki disease, but wanted to rule everything else out first.

“We were getting frustrated as we couldn’t understand why they couldn’t start her on the treatment first. It was really hard watching her being poked with needles umpteen times a day, just really stressful for her and for us.”

Delilah soon improved after being given treatment, and Ashleigh remembers her daughter being more like her usual self within hours of taking IVIG.

She still has to undergo regular tests on her heart and has a weakened immune system, but otherwise has a clean bill of health.

But Ashleigh hopes that her family’s experience can help other families to be aware of the condition.

She is backing a new campaign called Light a Landmark, which will see buildings like the Glasgow Science Centre lit up in red across the country later.

Professor Robert Tulloh, a paediatric cardiologist and the chairman of the charity the Societi Foundation, said: “Early diagnosis and rapid treatment reduces the risk of children with Kawasaki Disease suffering from devastating heart damage.

“Awareness of the signs and symptoms in the UK will help significantly with this.”