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Coronavirus: My son had rare disease possibly linked to coronavirus - it was a nightmare

Medical experts are investigating a possible link between coronavirus and cases of a rare severe inflammatory condition among UK children.

The health secretary has expressed his concern about what appears to be Kawasaki disease, a syndrome which is more common in parts of Asia.

Hayley Grix, whose three-year-old son Marley recovered after showing symptoms of the illness, has told Sky News how the family's ordeal was like "living a nightmare".

We'd had a really unsettled week with Marley showing a number of symptoms that we as parents had never seen before.

He had very rough hands, red swollen feet and his tongue was incredibly inflamed.

Later his eyes became completely bloodshot, his breathing was really fast and he just became completely lethargic.

That's when we said to ourselves "we've got to and get some medical attention".

We were seen straight away by a paediatric doctor and nurses at Frimley Park Hospital in Camberley, Surrey, who were straight on him.

They had him hooked up to fluids and he was given antibiotics.

They started looking at his case as a matter of urgency because he was very sick and pale.

It was a strange set of circumstances.

After they hooked him up to various things and were told his temperature had been soaring over the week we were confronted with three options.

They said it could be sepsis or that it could be something coronavirus-related but they weren't convinced.

They also said it could be something called Kawasaki disease, which I had never heard of and nor has pretty much anyone else I have spoken to .

The disease mainly affects children under five and symptoms include swollen lymph nodes, skin rashes, fever and in severe cases, inflammation of arteries of the heart.

A typical Kawasaki patient would respond to a blood product called immunoglobulin.

They would normally be treated with one intravenous shot of that and a response should be seen within 24 hours.

We saw a very slight improvement in that his temperature dropped and then he took quite a quick decline again.

I was speaking to the doctors getting quite upset about it, saying "what is happening with my child why is he not responding?".

Their answer was to give him the same treatment again but that didn't work either.

So they then started speaking with St George's Hospital in London and the children's hospital in Southampton.

And they all collectively, upon looking at his blood, all of his symptoms and everything he had gone through in that time frame, decided they were going to treat him with quite a high dose of steroids and also aspirin.

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The diagnosis as far as they could gather was what they referred to as atypical Kawasaki.

The disease in itself is very, very rare, especially in this country.

Senior doctors who have been in their field for say 30 years had maybe only seen three patients.

It's strange that now there is a coronavirus outbreak health officials are suddenly seeing more children presenting with Kawasaki disease or the atypical form of it.

It could be coincidental or it could be that they are similar strains.

As a mother, as parents, my husband and I were beside ourselves during this ideal.

One of us was staying with him each night by his bedside.

It was like living a nightmare. We were suddenly living a nightmare within a nightmare.

He came out of hospital on Sunday evening and he was very weak and wobbly, but they said he was well enough to come home.

Emotionally he's been through a very traumatic journey.

You've got to follow your gut instinct. As a parent, you know your child better than anybody does. So if you think something's wrong, inevitably it will be.

And you must, must, must seek help. If you think when you speak to a GP or health professional "no I'm still right, there is still something very wrong with my child", go to A&E. The paediatric wards are not busy.

There were a number of symptoms that were really starting to alarm me. Even two out of the five he was experiencing would have been enough.

It was enough, if I hadn't have got him help that quickly, putting my foot down and saying 'no, we're getting help' we'd be in a much darker place than what we're in now.