My son, 3, was left brain damaged after common cold turned into something more sinister
A LITTLE boy has been left brain-damaged after a common cold turned into something much more sinister.
Three-year-old Reggie Johnson has become a "totally different child", his heartbroken parents said.
The youngster went from having tonsillitis, to then suffering with a one-in-a-million incurable condition.
Reggie now lives in a hospital bed in his family home's living room and has to take 12 different drugs each day to stop excruciating spasms.
John, his dad, has told how he went from a happy child to being unable to communicate in a matter of weeks.
The youngster was diagnosed with the infection on a phone GP appointment less than two weeks before his health plummeted.
Reggie suddenly had a seizure while on holiday with his family in June and was rushed to hospital, where he suffered constant fits and spent three weeks in intensive care.
Two months later, doctors diagnosed him with an ultra-rare condition called FIRES.
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It causes kids to have back-to-back seizures that can last for more than 24 hours.
John, now Reggie's full-time carer with wife Natalie, 37, said: "He's a totally different child.
"Reggie was an absolutely normal three-year-old. Now, he's got brain damage and no communication.
"If I stand and say his name he won't even acknowledge me. He's in his own world.
"Our life has completely changed and it all started from tonsillitis - from a cold that any child can get.
"In the long term, there's no answer - this is his life."
Medics don't know why Reggie developed the condition, but FIRES is thought to be linked to inflammation after a minor infection.
John, from Harwich, Essex, added: "Reggie was walking and running from 10 months. He actually got moved up a class at nursery.
"And then all of a sudden he got a common cold and ended up with tonsillitis.
"I checked his throat and saw white pussy stuff at the back of his throat."
The GP thought Reggie had tonsillitis and prescribed a five-day course of antibiotics.
'WHAT THE HELL IS GOING ON?'
A week later, Reggie was back to his usual self as the family went on holiday on June 4 at a local caravan site - but the next day his health to a turn for the worst.
John said: "Reggie was on the trampolines and funfair rides and then all of a sudden he started being sick.
"We took him back and he had asleep, then when he woke up he went into a seizure."
The family immediately called an ambulance to take Reggie to Colchester Hospital, where he had a "massive seizure" and was "away with the fairies".
Doctors carried out a CT scan before transferring Reggie to Addenbrooke's Hospital in Cambridge for an MRI scan but they still couldn't work out what was wrong, John said.
He added: "They did the scan and said it was clear. We were like 'what the hell is going on here?'
"Reggie continued to suffer seizures in hospital and was moved to intensive care for three weeks.
What is FIRES?
FIRES stands for febrile infection-related epilepsy syndrome.
It is sometimes also called febrile illness-related epilepsy syndrome.
- It usually affects school-aged kids with an average age of 8 years old. But it can also affect children from two years old up to early adulthood.
- FIRES affects a previously healthy child after a brief, nonspecific febrile (fever) illness, such as a cold or flu.
- Seizures typically start 24 hours to 2 weeks after the illness begins. Fever might not be present when seizures start.
Doctors discharged Reggie from hospital in August - after eight weeks of treatment - and now he's able to walk but still can't communicate.
He lives in a hospital bed in the front room of his family's three-bed home, where siblings Kye, 17, and Lexi, 5, also stay.
Reggie has 20 doses of medication a day and needs sedatives to help him sleep - and he still gets seizures that send him back to hospitals.
John said: "It's so awful for Reggie. We can't take him anywhere now. We even have to medicate him to go to sleep.
"Me and Natalie take turns sleeping on the sofa with him - we just can't leave him at all.
"We live this 24 hours. We wake up and deal with the day and then go to sleep and deal with tomorrow.
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"It kills you inside but we both try our best to keep positive.
"We've found something to give us strength - that he's alive and he's breathing."
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