(WARNING: THIS ARTICLE CONTAINS GRAPHIC CONTENT)
This boy is truly a miracle. He has just celebrated his thirteenth birthday, yet the day he was born, doctors said he had no chance of survival. His family feels they are blessed to have him and will continue the fight for their precious son.
Tres Johnson from Bernie, Missouri, was born with craniofacial duplication, a condition where parts of the face are duplicated on the head. He is the only known living person with this condition—there have been 36 documented cases; most were stillborn or died shortly after birth.
“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,” says Brandy, 35, his mom and full-time carer.
“We don’t know what will happen in Tres’s 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,” his mom said.
When she first laid eyes on her newborn son, she found it hard.
“When they brought 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,” said Brandy. “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, and because his eyes are further apart he sees peripherally instead.”
She added: “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.”
But this mom’s amazing strength is palpable.
“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,” said Brandy.
Over the years as Tres struggled to keep going, many people were cruel to the extreme.
“After so many years I’ve just had to swallow my pride, try to stay calm and explain my son’s condition to them.
“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 I talk to them they see things from my perspective and regularly ask how Tres is doing.”
Tres was born with wide-spaced eyes, a cleft, two separate nostrils, a misshapen head, learning difficulties, and multiple seizures. The good news is he has been having treatment with cannabis oil, and the seizures have reduced from 400 per day to 40. He has endured multiple operations to correct the cleft, and reshape his head.
Brandy shared: “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.”
She added: “So many people that see what happened to our son, think of it as a tragedy. At first, 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.”