A YOUNG BOY was left in vegetative state after getting diagnosed with a rare syndrome, which affects just one in a million children.

Reggie Johnson, who is only three years old, suffers from Febrile Infection-Related Epilepsy Syndrome (FIRES), meaning he has back-to-back seizures which continue or recur for 24 hours or more.

What is causing even more pain to the family is that Reggie had no underlying health conditions but had the scary diagnosis after coming down with tonsillitis.

The precise cause for FIRES is still unknown but it is believed to be due to an overwhelming inflammation in response to a minor infection, similar to Reggie’s case.

As a result of his seizures, Reggie was put in hospital for eight weeks, three of which he spent on life support.

Harwich and Manningtree Standard: His father John Johnson, 35, of Harwich, said he is now looking at “ a totally different child”His father John Johnson, 35, of Harwich, said he is now looking at “ a totally different child”

He now has brain damage, suffers from short-term memory loss and is learning how to walk and speak again.

His father John Johnson, 35, of Harwich, said he is looking at “a totally different child”.

He added: “Reggie is a three-year-old boy who was perfectly normal with no health conditions.

“He was even moved up a year in nursery because he was too forward for his age.

“He was walking at ten months, talking and having a proper conversation with us which was incredible.

“He was treated for tonsillitis and all of a sudden he went poorly.

“He was like ‘the lights are on but nobody is home’.

“We called an ambulance and rushed him to Colchester Hospital.”

Harwich and Manningtree Standard: Reggie and his mum Natalie Johnson,37Reggie and his mum Natalie Johnson,37

What left both doctors and Reggie’s parents utterly confused was that all of his tests came out fine but he was still having seizures.

The situation got to a point where he was fighting for his life in Addenbrooke’s Hospital in Cambridge, where the family had some of the most traumatic times.

Mr Johnson said: “His whole body was shaking in seizure for three straight days.

“He was in a comma and there was no explanation of what is going on. He was on life support for three weeks.

“One doctor told me ‘they are scraping at the barrel’.

“They took him off the life support and from then on my son was severely disabled.

“Now we are looking at a new son, vegetated in a bed, not being able to move, on a massive cocktail of drugs.”

Everything has now changed for Reggie’s family.

Johny and his wife Natalie, 37, are both staying at home to look after their child while regaining his abilities again.

Mr Johnson said: “He lost communication, co-ordination and is in a hospital bed at home.

“If Reggie is in front of me he doesn’t even acknowledge I am talking to him.

“The doctors are now talking about autism traits from this. He hasn’t got a clue what he is doing.

“He is a danger to himself, we are just following him around the house 24/7. His brain never shuts down.

“He is on 13 drugs a day plus two injections and we have to sedate him as well to go to sleep.

“We have to have two people in the bath him to keep him safe. “

Mr Johnson said the only available treatment is drug-based and although every single day is a battle, the family is trying to stay strong.

“We wake up , we live that 24 hours a day and then go back to sleep and we never plan anything.

“Any illness can put Reggie back in hospital. He has up to six seizures every day.

“One thing in all of this is our son is alive and we will deal with our daily challenges and live each day as they come.”