A 10-year-old boy battling a rare congenital condition has to screw his jawbone forward every day so he can chew, talk - and even swallow normally. Brycen Wright was diagnosed with a the craniofacial birth defect Goldenhar syndrome that stunts growth on one side of the face.
The condition caused Brycen to suffer microtia - leaving him with a smaller ear and jaw bone on the right side - and a small hole in his heart. Brycen, who was four weeks premature, also had enlarged kidneys - that were attached - and required surgery.
Mother Briana Wright, 30, and father Adam, 31, revealed that Goldenhar syndrome means his body is growing - but his jaw is not. Brycen had a bone-anchored hearing aid (BAHA) fitted to his right ear and, as an infant, had speech and food therapy to ensure he can speak, swallow and chew properly.
Last month, Brycen underwent jaw distraction surgery, where a small device was attached to his lower right jawbone, that will bring the bone forward with the help of a screwdriver. Screwing the device causes his jaw to be moved forward by one-quarter of a millimeter - something he will have to do every day for 13 weeks.
Brycen is starting speech therapy as the frequent movement of his jaw has made it difficult to ennunciate. Mum Briana said that Brycen’s latest treatment is perhaps his most important and life-changing intervention.
She said: “Over the years doctors have said that the growth of his jaw has been stunted and he’d need surgery - otherwise it would become harder for him to talk and even sleep. We decided to have the surgery now as he already has sleep apnea and we didn’t want this to become something hard that he has to live with because we didn’t intervene early enough.
“It’s easier for your bones to grow and fuse when you're a child and the healing process is quicker, so we went for it. Every day we have to screw his jaw to move it forward really, really slowly. We’ll do this until December, when it will be removed.”
Brycen will need to learn how to use his new jaw as his teeth no longer touch or line up on his right side. After his removal surgery in December, Brycen will not have another jaw procedure until he is fully grown, so he will be observed by orthodontists to monitor his teeth and bone growth.
He may need another distraction surgery on his upper jaw, but Briana said any further interventions will all depend on how he grows. Despite his condition, Brycen is making the best of the life he has been given. Briana emphasised that he is very smart, well-liked by his peers and very athletic.
Before his recent surgery, he would spend at least five days a week playing baseball - now he has TikTok to keep his spirits up. With the help of his mother, Brycen has taken to social media to share his journey, after he decided that he wanted the world to see how strong and brave he is.
Briana added: “Brycen had been posting gaming videos on YouTube for a while so he already ‘got’ social media. He thought his jaw surgery was SO cool and so he asked if we could share more about him on TikTok - and it’s been amazing!
“We had no idea he was going to go viral - we thought that at most, maybe one thousand people or so would see our videos. The outpour of sheer love and support has been wonderful. The comments and shares have really boosted his confidence.”
Briana hopes that by sharing her son’s journey online, people will remember that everyone is created differently and deserves to be treated with kindness and respect. She said: “No one is the same. No matter the color of your skin, whether you are handicapable or able-bodied, if your differences are visible or hidden, you deserve respect.
“People all have something going on in their life, everyone has a struggle - emotional or physical - and everyone deserves acceptance.”
