A three-year-old boy from Essex is suffering from life-threatening seizures brought on after he caught a cold.
In May this year, little Reggie Johnson caught a common cold which he quickly recovered from in a week.
But while the family was on holiday at the beginning of June, Reggie started suffering from seizures.
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His condition became worse, baffling doctors and ultimately resulting in him needing life support for three weeks.
Reggie is now off of life support but has got brain damage, losing all of his communication skills and his ability to walk.
It’s because of a condition doctors now know is Febrile Infection-Related Epilepsy Syndrome (FIRES) – an extremely rare condition which affects only one in a million children after a brief illness from cold or flu.
In the largest study published so far on FIRES, one in ten of the children diagnosed sadly die from complications.
The study also found that nearly all children with the syndrome will have chronic epilepsy for the rest of their lives which will require medical management.
Here’s Reggie’s story.
‘Our boys life was in their hands’
Reggie’s dad, John Johnson, rushed him to Colchester Hospital after he had what he now knows was his first seizure in June.
Doctors performed a CT scan which came back with a shadow that was unclear.
He was then rushed to Addenbrooke’s Hospital in Cambridge the following day for an MRI scan.
John said: “By this stage when he was in Colchester he had more seizures and they continued to grow and get worse and worse.”
But the MRI scan at Addenbrooke’s came back clear, so no-one was sure what was going on.
“But when he came back from the MRI he started going into lots of seizures where he was holding his breath, he wasn’t breathing for like eight minutes and then it went from there” John added.
“He had six crash calls at Cambridge.
“And by that time after the sixth crash call, they decided to move him into intensive care.”
Reggie deteriorated further and had to be put on life support, which he then stayed on for three weeks.
At the same time, Reggie was undergoing multiple tests as doctors tried to work out what was wrong with him.
Soon he had a national panel of neurology specialists from all across the country working together to diagnose Reggie.
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“From there, a doctor said he was going to up his meds to really high levels, take him off life support and see what we were dealing with,” John said.
“Our boy’s life was in their hands – and we’re forever grateful as they saved our son.”
Because Reggie woke up, though he sadly came out the other side with severe disabilities.
John said: “He had to relearn to walk, which he did. And he really loved to walk as well.
“But then he lost all communication. All communication is completely gone from Reggie.
“When you try and communicate with him he’s miles away, he’s in his own world now.”
Reggie’s currently on a very strong cocktail of drugs, including ones which have had to have medical approval as they’re so expensive to administer.
He’s back home with his parents now, living in the front room of the house in his hospital bed.
John and Natalie take turns sleeping downstairs with him every night because he’s constantly awake – his brain just doesn’t shut down any more.
Because Reggie became unwell so quickly, John felt as though they’ve not had any time to prepare mentally for what’s happened over the last few months.
They now live day-to-day, 24 hours at a time.
John said: “We’ll get as much rest as we possibly can, but we’re just exhausted from everything.”
He added: “We’re just getting on with it the best we can as parents.”
The future is uncertain
One of the problems is that FIRES is such a rare syndrome that even medical professionals have very little knowledge of how best to treat and manage it.
John and Natalie have developed a small community through social media, meeting other families affected by the syndrome, including raising awareness of FIRES as a possible diagnosis.
John said a lady contacted them from Poland where doctors suspected her son had FIRES but didn’t know what to do.
The family has also set up an Amazon wishlist with a range of toys costing between £2 and £20 which people can donate to.
A few days before Christmas, the family will go back to the wards at Addenbrooke’s Hospital where Reggie was looked after and give all the toys to the children.
John said: “Addenbrooke’s allowed us to stay together the whole time through the pandemic.
“The Sick Children’s Trust absolutely blew us out of the water, they looked after us completely.
“They kept us together because they knew how difficult Reggie was.”
He added: “So that’s why we thought we’d do a wish list and see what happens.
“Just try and put some smiles on some children’s faces at Christmas.”
The future for the Johnson family is incredibly uncertain, but they’re still hopeful.
He said: “My boy’s alive, after the miracle that Addenbrooke’s Hospital achieved.”
You can donate to the Amazon wishlist here .
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