'It's Very Challenging': Rare Condition Forces Girl To Barely Open Mouth
SACRAMENTO (CBS13) – At just 12-years-old, Lily Jones has been through more surgeries than most will endure in a lifetime. Lily was born with Nager syndrome, a rare condition where she could barely open her mouth wide enough to eat and even had trouble breathing.
"It got to a point where she couldn't open her mouth at all. I mean, we could barely get a toothbrush between her teeth to brush her teeth. There's something not right," her mother Elysia told CBS13.
By age 7, she'd already been through 15 surgeries but she could still only open her mouth about three millimeters. That's the width of two pennies.
"It's very challenging. In fact, you don't know for sure you're going to get to the finish line," said Dr. Craig Senders, Director of the UC Davis Cleft and Craniofacial team.
Dr. Senders helped Lily through four-to-six more surgeries using a technique called distraction osteogenesis.
"That's where you make a cut in the jaw bone and as it's healing you move it further and further apart. So you're sort of fooling the body to grow new bone," said Dr. Senders.
Dr. Senders considered it a leap of faith and it worked. Lily can now open her mouth to about 20 millimeters and wide enough to eat M and M's and even hot dogs.
"Now she has a much more normal life. The fact that she can eat. Imagine you can only open up your mouth four millimeters. What can you put in there? Almost nothing," said Dr. Senders.
"Once we met the whole team at UC Davis Health, it really eased all of our minds," said Lily's dad, Nick.
Lily loves to laugh, sing and even added cheeseburgers and tacos to her menu. And through everything she's had to overcome, her doctor says what's most amazing is her personality that lights up a room. Dr. Senders says that's what kept her positive through all the difficult surgeries and grueling physical therapy that followed.