A “MIRACLE” youngster who was born with a very uncommon illness that caused him to have “two faces” has overcome all odds to reach his 13th birthday.
Doctors informed Tres Johnson’s parents Brandy and Joshua that their baby was unlikely to live at almost every stage of his life due to his craniofacial duplication.
Despite doctors told Tres Johnson’s parents he wouldn’t survive long after birth, Tres Johnson has beaten the odds and lived to be 13 years old.
The child, who is seen in the photo with his full-time caregiver and mother Brandy, was born with a very unusual disease.
The child, who is from Missouri in the United States, was born with a significant cleft, two different nostrils, an unusually shaped skull, cognitive deficits, and seizures.
Only 36 individuals worldwide have the disorder, which is brought on by the Sonic the Hedgehog (SHH) gene, which changes how the skull develops.
Tres has astounded his medical professionals, who four years ago indicated there was nothing more they could do for him once he reached adolescence and didn’t expect him to survive.
His parents believe that after beginning cannabis oil therapy, his seizures have decreased from 400 to 40 per day. He has had many procedures to reconstruct his skull, seal his cleft, and treat them.
Before physicians discovered Tres had craniofacial duplication—also known as Diprosopus, which is Greek for “two faces”—they gave him more than 14 different diagnoses.
His full-time caregiver, Brandy, 35, said that he was both lovely and surprising. One side of his face resembled our elder son, while the other resembled our middle kid.
Tres was born with a big cleft, two different nostrils, an irregularly shaped skull, cognitive deficits, and seizures. The photo shows him on his first day without a ventilator.
The child needed many surgery to seal his cleft and reshape his head.
An early scan of Tres as a child demonstrating the malformation in his head brought on by craniofacial duplication.
“When he was born, his cleft was so huge that it extended up into his nasal canal, and since it was completely open, you could see into his sinus cavity.
His eyes seemed to be expanding outward and inward; as a result of his eyes being further apart, he perceives more peripherally.
Doctors had their doubts about his prognosis, and Brandy, a mother of three, says it was tough to get her first glance of her baby.
The only thing I could touch when they brought him into my room was his leg since he was strapped to a carrier box with all of his equipment, according to Brandy.
“My husband hadn’t fought for Tres; the doctors weren’t going to keep him alive and were going to let him depart.
We were always in it for the long haul, so once I learned that he was still alive and present, that was all that mattered to us.
Tres has now endured a number of surgeries to seal the cleft and attempts to modify his skull to assist alleviate pressure on his brain.
Despite this, he has intractable epilepsy, which causes him to have more than 400 seizures every day, and his mother now treats him with cannabis oil after trying every other medical option.
Tres following his first operation on July 7, 2004, when medical professionals questioned if he would survive.
“We were told there was nothing more doctors could do for him four years ago,” Brandy said.
“I conducted a lot of research, and in the first week of taking cannabidiol, he had less than 40 seizures per day, and over the course of more than two years, his seizures have decreased by more than 90%.
He was around 40 pounds and is now pushing 77 pounds (5st 7), and his size has more than doubled. He is continually becoming stronger and wiser.
Although it was one of the toughest, using cannabis oil was the finest choice I ever made.
“We don’t know what Tres’ future holds; nobody anticipated that he would be here today,” Brandy concluded.
“Celebrating his birthday was really thrilling and emotional, but waiting for the big day was very bizarre; I was a nervous wreck thinking about him.
Tres turning 13 is a big occasion; it’s amazing to think that he has survived this long considering that the previous 13 years have consisted solely of a struggle for existence.
“I’ve lost count of how many times people warned us he wouldn’t survive, yet now he’s a teenager. We now choose to disregard their prognostications and concentrate on taking each day as it comes.
There isn’t much information available concerning the disorder. Many stillborn instances show duplicate facial characteristics, including four eyes, two noses, and two lips.
“In other instances, a duplication of blood arteries in the brain results in many brains; Tres, however, does not have this, setting him apart from all other cases.
Because of the cysts in his brain, he has developmental delays and is psychologically at a young age, although he is making steady improvement in all areas.
Although it was predicted that he would never be able to walk, he still tries and moves about on his butt.
“So many people who see what happened to our kid view it as a tragedy, but to me, the fact that our son is still here today despite my previous belief that he would die, is all that counts.
For as long he survives, “My goal is to keep him here and make sure he knows how loved he is.”
The family has heard a variety of harsh remarks about their kid, but instead of running away, they fight the unpleasant ignorance by spreading knowledge and raising awareness.
“Over the years, I’ve heard every kind of comment you can think of, from ‘kill it’ to ‘put him down’ to being called’selfish’ for keeping him alive,” Brandy added.
“After all these years, I finally had to swallow my pride, attempt to remain composed, and inform them about my son’s illness.
“After I talk to them, they seem to understand my viewpoint and frequently inquire about Tres’ well-being.”
The family claims that they have had difficulty getting Tres medical care and that because of the uniqueness of his disease, many physicians see him as a potential study subject.
It has been difficult for us to find a doctor who would consider my son as a person and not as a case study. Many have volunteered to collaborate with us, but not with my son’s best interests in mind, Brandy said.
“One offered us a’miracle operation’ to restore his appearance, but I couldn’t care less about his appearance as long as he was comfortable and alive.
“We have only undergone the procedures that were required; we have not undergone any cosmetic procedures. We are not and never will be ashamed of him or how he looks.”
Unexpectedly, a young boy who was born without a nose passed away just a few months after reaching his second birthday.
