A boy born with a rare “two face” condition has defied all odds to celebrate his 13th birthday.
Tres Johnson from Bernie in Missouri, US, marked the milestone—despite doctors giving him “zero chance of survival” when he was born. He has craniofacial duplication, whereby parts or all of the face are duplicated on the head, according to the MailOnline.
Tres is believed to be the only survivor of the disorder—there are only 36 cases in the world ever been recorded.
Parents, Brandy and Joshua have battled to help their son while doctors are amazed he is alive as many with the condition are stillborn. Brandy, 35, his full-time carer, said: ‘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. In craniofacial duplication, excess of the protein SHH leads to widening of facial features and to duplication of facial structures.
Tres was born with a large cleft, his eyes spaced further apart, two separate nostrils, an abnormally shaped head, cognitive delays and he also suffers from seizures. 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. ‘Put him down’ The family revealed how the face horrific abuse from strangers who have told them to ‘kill it’ and “put him down.”
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 the things see my perspective and regularly ask how Tres is doing.’ Brandy says so many people pity her son—but for her and her husband, Tres is a blessing.
“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.”
Shocked but determined
Mother-of-three Brandy said when he Tres was born, admits the first glimpses of her son were difficult.
“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,” she 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.’ Brandy and Joshua were determined to not give up on their child—and fight for him to be kept alive.
“Doctors weren’t going to sustain Tres and planned to let him pass if my husband hadn’t fought for him, they had never seen anything like him before,’ she explained.
“Once I found out he was here and still alive that was all that mattered to us, we always were in it for the long haul.”
Tres received over 14 different diagnoses before it was recognised that he had craniofacial duplication, also known as diprosopus, the Greek word for “two faces.”
Since then, he 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 over 400 seizures a day.
After exhausting all medical options his mother now treats him with cannabis oil. She says in two years he has had over a 90 percent reduction in seizures. 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.
“He is cognitively improving and his size more than doubled, he was under 18kg and now is pushing 35kg, he is constantly growing stronger and smarter.
“Using cannabis oil is the best decision I ever made.”
We’re not ashamed of him
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.”
The family have a GoFundMe page here to raise money for their son’s medical costs.