Harwich boy diagnosed with rare FIRES syndrome
A YOUNG BOY was left in a vegetative state after being diagnosed with a rare syndrome, which affects only one in a million children.
Reggie Johnson, who is only three years old, suffers from Febrile Infection Epilepsy Syndrome (FIRES), which means he has consecutive seizures that continue or recur for 24 hours or more.
What causes the family even more pain is that Reggie had no underlying health issues, but was given a frightening diagnosis after contracting tonsillitis.
The precise cause of FIRES is still unknown, but it is believed to be due to overwhelming inflammation in response to a minor infection, similar to Reggie’s case.
Following his seizures, Reggie was hospitalized for eight weeks, three of which were in intensive care.
He now has brain damage, suffers from short-term memory loss and is relearning to walk and speak.
His father John Johnson, 35, of Harwich, said he looked at “a totally different child”.
He added: âReggie is a three year old boy who was perfectly normal with no health issues.
âHe was even brought forward a year in a nursery because he was too advanced for his age.
âHe was walking at ten months old, talking and having a good conversation with us, which was amazing.
âHe was treated for tonsillitis and all of a sudden he was bad.
âIt was like ‘the lights are on but no one is home’.
“We called an ambulance and rushed him to Colchester Hospital.”
What left Reggie’s doctors and parents completely confused was that all of his tests went well, but he was still having seizures.
The situation got to a point where he was fighting for his life at Addenbrooke’s Hospital in Cambridge, where the family went through the most traumatic times.
Mr Johnson said: ‘His whole body was shaking for three consecutive days.
âIt was between a comma and there was no explanation for what was going on. He was on life support for three weeks.
âA doctor told me ‘they’re scratching the barrel.’
âThey took him out of life support and from that point on my son was severely disabled.
“Now we watch a new son, vegetated in a bed, unable to move, under a huge cocktail of drugs.”
Everything has changed for Reggie’s family now.
Johny and his wife Natalie, 37, both stay at home to care for their child while regaining his abilities.
Mr Johnson said: “He has lost communication, coordination and is in a hospital bed at home.
“If Reggie is in front of me, he won’t even recognize that I’m talking to him.”
âDoctors are now talking about autistic traits from that. He has no idea what he’s doing.
âHe’s a danger to himself, we just follow him around the house 24/7. His brain never stops.
âHe takes 13 drugs a day plus two injections and we also have to sedate him to go to sleep.
âWe have to have two people in the bath of him to keep him safe. ”
Mr Johnson said the only treatment available was medication and although every day is a battle, the family are trying to stay strong.
âWe wake up, we live it 24 hours a day, then we go back to sleep and we never plan anything.
âAny illness can send Reggie back to the hospital. He has up to six seizures a day.
“One thing in all of this is that our son is alive and we are going to face our daily challenges and live each day as they come.”