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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.
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”.
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.”
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