Eight-year-old Jake O’Connell has been left “exhausted and unable to do the things that he once loved” after his diagnosis of long COVID.

Jake was first diagnosed with COVID in August 2021, then in December of that same year, and once again in April 2022.

Speaking to The Pat Kenny Show, his father Paul O’Connell said: “He's gone from the first instance with mild symptoms – he recovered but wasn't 100% – to the second time he got it, his symptoms increased dramatically.”

“My wife Sarah started to recognise symptoms; she lives with Myalgic encephalomyelitis (ME) …  to be completely honest, I didn't want to believe it,” he said.

“But then I had to give into the fact that he's coming back almost in tears from school.”

Change in behaviour

Mr O’Connell said prior to Jake contracting COVID, he was a very energetic young boy.

“Every weekend we were at parks we were [playing] football, we were [playing] Frisbees, we were out and about,” he said.

“One of his favourite things to do was to head to Bray and do the prom and throw stones in the water and that all went.

“When you go to a birthday party with a child, the first thing they'll do is say, ‘Can we stay five more minutes?’ He will literally be there about an hour and say, ‘When are we going home?’”

Jake was diagnosed with Paediatric Acute Onset Neuro Psychiatric Syndrome (PANS), which his father said was “like a light switch got flipped.”

“We thought it was some form of an autistic trait … his OCD kicked in, his tantrums would be physical, his outbursts would be emotional.”

Jake O'Connell standing outside on a rock (Photo provided by father Paul O'Connell)

Exhaustion

Mr O’Connell said the illness has meant “there were times I have to carry him up the stairs to bed, or I have to cut up his food and help him and spoon feed him, or I have to I have to help him brush his teeth because he's too tired.”

As a result, Jake’s family feel “done” trying to educate his school on the severity of his diagnosis.

“He can only cope for two, three days – he's kind of broken after even with the day rest in between,” he said.

“It's the cognitive disability with COVID – there's this brain fog.

“If someone gets [him] to do long division for five minutes, [he doesn’t] have the mental capacity, he doesn't take things in, and it confuses him and it exhausts him.”

“He's just a broken little boy.

“I had to readjust my way of thinking looking at his little life; he’s not going to be able to do all of these things. He’s falling behind in everything.”

Jake O'Connell doing a jigsaw (Photo provided by his father Paul O'Connell)

‘Long COVID in kids is rare’

Mr O’Connell said the Government’s statement that “long COVID in kids is rare, and they tend to recover” was very upsetting for their family.

“It's not that rare and my kid hasn’t recovered,” he said.

He described the process of acquiring the diagnosis for Jake, which involved flying to London to meet consultants.

“We had to fly him over which almost destroyed him because he's not used to that level of adrenaline getting through an airport and getting through a city like London … they diagnosed him in 24 hours,” he said.

“There's nothing in place and there's no training for GPs [in Ireland].

“The fact is that the HSE won't even engage until you're over 16, there's no support.”

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