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.