Meet Tres Johnson of Bernie, MO:
According to the Daily Mail, doctors told Tres’s parents that he had “zero chance of survival.”
Born with “a large cleft, his eyes spaced further apart, two separate nostrils, [and] an abnormally shaped head,” Tres has craniofacial duplication, a rare condition where either a portion or all of an individual’s face is duplicated.
There have only been 36 cases of craniofacial duplication ever recorded.
As a mother of two other boys, Brandy Johnson admitted that it wasn’t easy looking at Tres after he was first born.
She told the Daily Mail seeing baby Tres was both “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.”
The doctors had never seen anything like Tres before, and they planned to pull the plug. But Joshua Johnson fought to keep his son alive.
Throw Back Thursday!? To a Baby Tres with peach fuzz ? This was his first 4th ofJuly, on our first family camping trip to Sam A Baker. 2004 just 3 days before his first surgery.
And now Tres, the only survivor of craniofacial duplication, just celebrated becoming a teenager.
His mom told the Daily Mail she doesn’t know what the future holds for Tres, that no one thought he would still be alive 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.”
She said that she “lost count” of the number of times she and her husband were told Tres wouldn’t make it, so they decided to stop listening:
“We now ignore their predictions and just focused on one day at a time.”
Through the years, the family has endured horrible statements from strangers.
“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.”
Brandy said so many people feel sorry for her son and think of the circumstances as a tragedy.
The other day when it was Sunny and 85° ?
Posted by Tres A. Johnson' Journey with Epilepsy and Diprosopus on Monday, May 1, 2017
She, however, sees it differently:
“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.”
Brandy said the family has struggled to find sincere help for Tres, who, despite numerous surgeries, suffers from hundreds of seizures a day. Many doctors, she said, are only looking at Tres as a “case study,” wanting to perform cosmetic surgeries to “make him look normal.”
“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.”
After careful research and failure of all other medical options, Brandy now uses Cannabis oil to treat Tres. Within two years, she said his seizures have decreased to under 40 a day.
Not only that, but his cognitive functions are improving, and his body is growing stronger.GoFundMe
Brandy plans to help him continue the fight for as long as he can:
“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.”
The Johnson family has created a GoFundMe page in order to raise funds for medical costs.