A boy who was born with an extremely rare condition that gave him “two
faces” has defied the odds to celebrate his 13th birthday. Tres Johnson
has craniofacial duplication and doctors told his parents, Brandy and
Joshua, that their son was not likely to survive for long. Surprisingly,
he has surpassed expectations to live longer than expected.
Tres,
from Missouri, USA, was born with a large cleft, two separate nostrils,
an abnormally shaped head, cognitive delays and suffers seizures. The
condition is so rare that there are only 36 people in the world who have
it. It is caused by the Sonic the Hedgehog (SHH) gene which alters the
formation of the skull. Tres received more than 14 different diagnoses
before doctors realized he had craniofacial duplication, also known as
Diprosopus - the Greek word for "two faces".
He has undergone
multiple operations to reshape his skull and close his cleft, relieve
pressure on his brain to treat his seizures, which have reduced from 400
to 40-a-day since starting cannabis oil treatment. Speaking of what
life has been like for since Tres came into their world, Brandy, 35, who
is Tres' mother and also his full-time carer, said her first look at
her son was difficult.
She said: "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, because his eyes are further apart he sees
peripherally instead."
Brandy continued: "When they bought 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. Doctors weren't going to
sustain Tres and planned to let him pass but my husband hadn't fought
for him. Once I found out he was here and still alive that was all that
mattered to us, we were always in it for the long haul."
Four
years ago, doctors said there was nothing more they could do for Tres,
after reaching his teens. His mother carried out research and came
across Cannabidiol. She started to use that for him and it helped a lot.
Brandy
said: "Four years ago, we were told there was nothing more doctors
could do for him. I did a lot of research and the first week using
Cannabidiol his seizures went down to under 40 a day, in over two years
he has had over a 90 per cent reduction in seizures. He is cognitively
improving and his size more than doubled, he was under 40lbs and now is
pushing 77lbs (5st 7), he is constantly growing stronger and smarter.
Using cannabis oil is the best decision I ever made though it has also
been one of the hardest.
"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."
Tres' family have received hurtful
comments about their son but instead of hiding him away they address the
offensive remarks by educating the ignorant people and raising
awareness.
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 they things see my perspective and regularly
ask how Tres is doing."
Because of the rarity of Tres' condition,
it is hard to fund a doctor qualified to handle his case and the few
doctors who attend to him see him as a research project.
Brandy
said: "It's been hard for us to find a doctor who will treat my son as a
person and not a case study, many have offered to work with us but not
with my son's best interest at heart. One offered us a 'miracle surgery'
to make him look normal, but 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."
