Tres Johnson has craniofacial duplication and doctors told his parents that he was unlikely to survive
A “MIRACLE” boy born with an extremely rare condition that gave him “two faces” has defied the odds to celebrate his 13th birthday.
Tres Johnson has craniofacial duplication and doctors told his parents Brandy and Joshua that their son was unlikely to survive at almost every stage of his life.
The youngster, from Missouri, USA, was born with a large cleft, two separate nostrils, an abnormally shaped head, cognitive delays and suffers seizures.
There are only 36 people in the world with the condition – caused by the Sonic the Hedgehog (SHH) gene which alters the formation of the skull.
Tres has amazed doctors, who didn’t expect him to live and four years ago said there was nothing more they could do, after reaching his teens.
He has undergone multiple operations to reshape his skull and close his cleft, as well as treat his seizures, which have reduced from 400 to 40-a-day since starting cannabis oil treatment, his parents claim.
Tres received more than 14 different diagnoses before doctors realised he had craniofacial duplication, also known as Diprosopus – the Greek word for “two faces”.
Brandy, 35, his full-time carer, said: “He was adorable and shocking at the same time, one side of his face looked like our older son, the other resembled our middle son.
“When he was born he had such a large cleft that it went up into his nasal passage and you could see into his sinus cavity as it was all open.
“His one eye looked like it was bulging out and the other sucked in, because his eyes are further apart he sees peripherally instead.”
Doctors doubted whether he would survive and mum-of-three Brandy says the first glimpses of her son were difficult.
He was adorable and shocking at the same time, one side of his face looked like our older son, the other resembled our middle son
Brandy Johnson
Brandy said: “When they bought him into my room he was hooked up to a carrier box with all of his monitors, the only thing I could touch was his leg.
“Doctors weren’t going to sustain Tres and planned to let him pass but my husband hadn’t fought for him.
“Once I found out he was here and still alive that was all that mattered to us, we were always in it for the long haul.”
Since then, Tres has undergone numerous operations to close the cleft and efforts to reshape his skull to help relieve pressure on his brain.
Despite this, he has intractable epilepsy meaning he suffers from more than 400 seizures a day and after exhausting all medical options his mother now treats him with cannabis oil.
Brandy said: “Four years ago, we were told there was nothing more doctors could do for him.
“I did a lot of research and the first week using Cannabidiol his seizures went down to under 40 a day, in over two years he has had over a 90 per cent reduction in seizures.
“He is cognitively improving and his size more than doubled, he was under 40lbs and now is pushing 77lbs (5st 7), he is constantly growing stronger and smarter.
DIPROSOPUS – THE RARE ‘TWO FACES’ DISORDER
ALSO known as diprosopus, the Greek for “two faces”, craniofacial duplication is a very rare disorder.
It is a congenital defect, that causes duplication of some facial features.
A baby born with the condition will have a single body, normal limbs but facial features that are duplicated to varying degrees.
In more mild cases, a baby may have two noses and four eyes that are spaced far apart.
But in extreme cases, a baby’s entire face could be duplicated.
In many cases babies can lack a brain, and have severe heart defects.
Most infants diagnosed with diprosopus are stillborn, and there are fewer than 50 cases reported across the world.
“Using cannabis oil is the best decision I ever made though it has also been one of the hardest.”
Brandy continued: “We don’t know what will happen in Tres’ future, no one thought he would be here today.
“It was very exciting celebrating his birthday and emotional, but very surreal waiting for the big day, I was an anxious mess worrying about him.
“Tres reaching the age of 13 is a huge deal, it’s surreal knowing he’s made it this far, the past 13 years have been nothing but a fight for survival.
“I lost count of the amount of times we were told he wouldn’t make it but here he is today a teenager, we now ignore their predictions and just focused on one day at a time.
“There’s not a lot known about the condition, most cases have duplication of facial features, some with four eyes, two noses and mouths, but many are stillborn.
“With other cases, there is a duplication of blood vessels in the brain leading to multiple brains, but Tres doesn’t have that making him different from all other cases.
“He is developmentally delayed, because he has cysts in his brain, mentally he is at the age of an infant but he is progressively improving in all areas.
“Mobility wise we were told he would never walk, but that doesn’t stop him from trying and scooting around on his butt.
“So many people that see what happened to our son, think of it as a tragedy but before I thought my son was going to die yet he’s still with us today, to me that’s all that matters.
“My goal is to keep him here and make sure he knows how loved he is, for however long he lives.”
The family have received a range of hurtful comments about their son but instead of hiding away they combat the offensive ignorance with education and awareness raising.
Brandy said: “I’ve heard every comment you can imagine over the years, from ‘kill it’, ‘put him down’ to being called ‘selfish’ for keeping him alive.
“After so many years I’ve just had to swallow my pride, try to stay calm and explain my son’s condition to them.
“After I talk to them they things see my perspective and regularly ask how Tres is doing.”
Tres reaching the age of 13 is a huge deal, it’s surreal knowing he’s made it this far, the past 13 years have been nothing but a fight for survival
Brandy Johnson
The family say they have struggled to find help for Tres and claim that due to the rarity of his condition many doctors see him as a research project.
Brandy said: “It’s been hard for us to find a doctor who will treat my son as a person and not a case study, many have offered to work with us but not with my son’s best interest at heart.
“One offered us a ‘miracle surgery’ to make him look normal, but I don’t care about how he looks, what’s important is he is alive and comfortable.
“We have only done the surgeries that were necessary, not any cosmetic ones, we are not ashamed of him or how he looks and never will be.”
It comes as a baby boy born with no nose died just months after celebrating his second birthday.
