A boy born with �two face� condition predicted by doctors to die has shamed them all as he defied all odds by turning 13.
The “two face boy” with his siblings
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.
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