Our baby boy died of Covid-linked Kawasaki disease – now we want other parents to know the signs

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THE GRIEVING parents of a baby who died of the Covid-linked Kawasaki disease have urged others to learn the signs of the illness.

Little Alex Parsons was just eight-months-old when he died from Kawasaki disease on April 25 this year.

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His parents Kathryn Rowlands, 29, and Jon Parsons, 31 had no idea what the pin prick rash was that had spread all over their son’s body.

The disease is now being linked to one called Paediatric Multisystem Inflammatory Syndrome (PIMS-TS) that has been affecting youngsters after they have had Covid-19.

While Alex’s parents don’t know if he had coronavirus before he died, they have been raising awareness of the illness which has been linked to many similar cases.

This has been credited with saving at least a dozen other children.

The couple, from Tavistock, Devon, said they rushed Alex to hospital when his condition worsened, but despite prompt treatment he passed away.

Kathryn has now made it her mission to raise awareness of the disease.

She has since been contacted by 12 families from around the world who claim they have identified symptoms because of her son’s story.

She said: “He is amazing, he has changed my life for ever and the fact that he has managed to save other children is quite overwhelming.

“He has saved at least 12 lives, several people got in touch saying how because of the awareness that was raised they were aware of the signs and sought treatment, it saved their lives.

“Everyone said they remembered the stories and the pictures and then when their children became ill they were able to get help immediately.

“The heartbreak of losing Alex will never go away and nothing will make that better, but the fact he has raised this awareness and saved other people brings some sort of comfort to us.”

Just before Alex fell ill he was a fit and healthy baby.

Kathryn had never heard of Kawasaki until doctors mentioned it.

She said when Alex became unwell he was quite miserable and he had a high temperature.

The next day Alex woke with a pinprick rash that spread quickly.

“It looked like he had sunburn all over his body. Then he had a lump that came up in his neck, that was really large and we queried if it could be mumps to begin with.

“Then he had sickness and diarrhoea and he was admitted to hospital, then he got really dry, cracked bleeding lips.

“His palms of his hands and soles of his feet were bright red, and you could feel how fast his heart was racing.

“Alex was eight and a half months old when he passed away, he was our first child. It was devastating.”

The death has left the whole family devastated and the family is now raising awareness so that other families don’t have to suffer.

She added: “I’d never heard of the disease, the first time I heard of it was when a doctor queried it in front of us.

“It’s the leading cause of acquired heart disease in children, the Kawasaki society has raised a lot of awareness but it’s not very widespread, you just don’t know about it until someone you know is affected by it.

“More people should know about it, definitely. I feel that I would love there to be a greater awareness in general”.

She said a lot of children can be misdiagnosed.

“They don’t get the treatment they need and then develop problems with their heart. Alex went from 0 to 100 and they did everything they could have done.

“With a lot of children it’s the delayed response to being treated and diagnosed that causes the long term issues.

“Alex had the treatment. But a doctor said that children under the age of one and males are the most worried about – as it seems to affect them more and they don’t respond to the treatment as well.”

She added that doctors told the family the day before Alex died that they had been concerned with his scans.

Kathryn added: “We didn’t expect it to happen the way it did.”

The family has since set up a Facebook group where they share news about the illness and it was through this group that other parents contacted Kathryn.

She added: “The people who contacted us are from all around the UK, a few from America got in touch as well.

“A lady who was outspoken about it said it was purely because of Alex that she knew anything about it, she’s very thankful and said he will always be her hero.

“It can never bring him back or make things better for him, but the fact that he’s raised that awareness and saved other peoples’ lives is the only comfort that we can take from the situation.”

Kathryn is also now urging the Government to explore the link between Covid and Kawasaki disease, as they believe Alex may have suffered with he virus before his death.

Her sister, Hannah, said: “We cannot say either way if Alex had previously contracted Covid, although he was symptomatic with a cough and fever in late February, but at the time, no testing was available.

“PIMS-TS has similarities to Kawasaki disease but it appears to be affecting children of all ages following a Covid-19 infection.”

A JustGiving page has also been launched to help support Kathryn and Jon.

Kawasaki disease, also known as mucocutaneous lymph node syndrome, is a rare condition that mainly affects children under the age of 5.

With the hospital treatment, the symptoms usually become less severe but in some cases it causes the blood vessels to become inflamed and swollen, which can lead to complications in the blood vessels that supply blood to the heart.

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