Shortly after Tres Johnson was born, doctors gave him zero chance of survival. In the years following, different medics, at various stages, reaffirmed that crushing prognosis – death was imminent.
However, the miracle boy has just celebrated his 13th birthday as he continues to defy the odds and leave top medical professionals positively baffled.
Tres, from Bernie, Missouri, U.S., was born with the rare ‘two face’ condition, craniofacial duplication, a disorder caused by the SHH protein that alters the formation of the skull and face.
One of only 36 cases worldwide, he 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.
His parents Brandy and Joshua continue to fight for their son’s life while amazed doctors do not understand how he is alive as many with the condition are stillborn.
Tres 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.
The family battle horrific abuse from strangers with people telling them to ‘kill it’ and ‘put him down’.
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.
“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 duplications 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.
0 comments:
Post a Comment