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.”