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Tres JohnsonAmerican adolescent with craniofacial duplication
Country:
 USA |
Content:
- American Teenager with Craniofacial Duplication
- The Challenges of Craniofacial Duplication
- A Mother's Unwavering Love
- The Power of Cannabis Oil
- A Family's Fight for Survival
American Teenager with Craniofacial Duplication
Tres Johnson, a teenager from Bernie, Missouri, was born with a rare congenital disorder known as craniofacial duplication. Only 36 people in the world have been registered with this condition, and Tres is considered the only survivor among them. Despite being given 'zero chances of survival,' Tres has bravely endured cruel bullying from strangers and has defied the odds, recently celebrating his 13th birthday. His parents, Brandy and Joshua, fought tirelessly to help their son. Doctors continue to be astonished, emphasizing that children with craniofacial duplication are usually stillborn. Brandy, now 35, says, "We don't know what the future holds for Tres, but no one ever thought he would live this long." "Reaching the age of 13 for Tres is a huge accomplishment. It's just an unreal event when you know that all 13 years have been nothing but a fight for survival." "I've lost count of how many times we were told our child wouldn't make it. But here he is, and now he's a teenager. We ignore all the predictions now and focus on the present day."
The Challenges of Craniofacial Duplication
Craniofacial duplication, also known as diprosopus or "two faces" in Greek, is characterized by an excess of the SHH protein, which leads to the widening of the face and duplication of facial structures. Tres was born with a large cleft, widely spaced eyes, separated nostrils, an abnormally shaped head, and cognitive delays. He also suffered from seizures. The child underwent several surgeries to reshape his skull and close the cleft. The number of seizures decreased from 400 to 40 a day after Johnson started receiving cannabis oil. Strangers who reacted to Tres's unusual appearance often not only spewed vile insults at him but also advised his parents to "kill" or "put him to sleep." Brandy says, "For many years, I've heard comments that you can only imagine. We were told to 'kill it,' and we were even called 'selfish' for preserving our child's life."
A Mother's Unwavering Love
"After all these years, I had to swallow my pride, try to stay calm, and try to convey to others what my son is like." "After talking to me, people come to a more objective perception and then constantly ask how Tres is doing." Brandy adds that many people feel sorry for her child, but for herself and her husband, Tres is a true blessing. "He has developmental delays because cysts have formed in his brain," said Brandy. "In terms of mental development, our son is like a baby, but he is gradually progressing in all areas." "My goal is to continue supporting Tres's life and be confident that he will never stop understanding how much we love him." She continues, "When the doctors brought my son to me in the ward, he was connected to a portable device with all those monitors. The only thing I could touch was Tres's little leg." "The baby both shocked and inspired. One side of his face resembled our older son, while the other side resembled our middle child." At birth, Tres had such a large cleft that it extended into his nasal cavity, allowing the cavity of his nasal sinus to be visible. "One eye seemed to protrude, and the other seemed to retract because the eyes themselves were far apart, which is why Tres has peripheral vision," explains Brandy. Both parents were determined not to give up on their child and fight for his life from the very beginning. "The doctors were not going to help Tres and planned to let him die if my husband hadn't intervened. The medical community had never encountered anything like this before," Brandy said. "Once we found out that our son survived and stayed with us, everything else ceased to matter. We took matters into our own hands, seriously and for a long time."
The Power of Cannabis Oil
Before Tres was diagnosed with craniofacial duplication, doctors considered 14 different potential conditions. Since then, the boy has undergone numerous surgeries to close the cleft and attempt to reshape his skull to stabilize the pressure in his brain. Johnson also suffered from "untreatable" epilepsy, experiencing up to 400 seizures a day. Following the doctors' advice without success, Brandy ultimately began giving her son cannabis oil. She assures that within two years, the number of seizures decreased by 90%. "Four years ago, we were told that nothing else could help our child," recalls Brandy. "I did a lot of research, and in the first week of using cannabidiol, the number of seizures in Tres decreased to 40 a day." "His cognitive abilities improved, and on top of that, Tres doubled his weight – from less than 18 kg to the current 35 kg. He never stops learning and getting stronger." "Using cannabis oil has been the best decision I have ever made." The boy's parents say that in their attempts to find additional help, they have encountered many doctors who saw him as a "research project" due to his rare condition. Brandy stated, "It was difficult for us to find a doctor who would treat our son like a person, not an object of research. Many suggested working with Tres, but they did it without heart, without caring for him." "Someone offered us a 'miracle operation' to make Tres look normal. But I don't care how my child looks. The main thing is that he is alive and comfortable." "We agreed to surgeries only out of necessity, not to correct cosmetic flaws. We are not ashamed of our son, we are not ashamed of how he looks, and we never will be."
A Family's Fight for Survival
To raise funds to cover medical expenses, Tres's family opened a crowdfunding page on the platform 'GoFundMe'.
