Due to a rare syndrome, a California girl who could hardly open her mouth receives “life-changing” treatment.
A 12-year-old girl with a rare illness that left her unable to open her mouth has finally received a “life-changing” treatment. The family of the girl is relieved that she can again eat and breathe normally.
Lily Jones of California was born with the highly unusual Nager Syndrome, which prevented her from properly opening her mouth. The absence of ear canals and abnormally short forearms are among the craniofacial issues faced by people with this disease. Lily had trouble breathing and eating as well.
“She couldn’t open her mouth at all,” says the narrator. We could barely brush her teeth with a toothbrush between her teeth. Elysia, her mother, told CBS13 that something wasn’t quite right.
She could barely expand her mouth approximately three millimeters, the breadth of two pennies, despite treatment. Lily had undergone 15 surgeries by the time she was seven years old.
The family then went to the UC Davis Medical Center in California.
A group lead by Dr. Craig Senders, director of the UC Davis cleft and craniofacial team, opted to try distraction osteogenesis surgery.
“It’s a difficult task. Dr. Senders was quoted by CBS as saying, “You never know if you’re going to make it to the finish line.”
Using the method, the girl underwent four to six surgeries. “You make a cut in the jaw bone and when it heals, you pull it apart more and more. So you’re deceiving the body into growing new bone,” Dr. Senders explained.
Distraction hardware, a device with screws that attaches to both sides of the jawbone, was used by the researchers. According to the hospital, the screws are gradually turned to generate a longer jawbone and more space for her tongue.
Lilly can now open her mouth to roughly 20 millimeters thanks to the procedure. “It may not seem like much, but it means a lot to her,” Elysia explained. “She got to eat her very first peanut M&M.” Lily’s favorite menu now includes cheeseburgers and tacos.
Elysia was overjoyed to watch her daughter for the first time shove her tongue out at her sibling.
Nager Syndrome is an uncommon illness caused primarily by SF3B4 gene abnormalities. So yet, just 100 such cases have been reported, with many more going undiagnosed. While the majority of people with Nager syndrome are healthy, a few seriously impacted instances have catastrophic kidney or cardiac defects. Brief News from Washington Newsday.