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8-year-old girl with rare cranofacial condition goes through 18th surgery

"A little boy made a comment about her arms being short. Her response was 'Well I have long legs!'"

On Wednesday night, a group of doctors and nurses from the UC Davis Cleft and Cranofacial team went out together to watch Wonder, the big-screen movie about a young boy with Treacher Collins syndrome starting 5th grade.

Many are praising the film for raising awareness about cranofacial conditions.

Another similar condition is Nager syndrome. 8-year-old Lily Jones from Reno was born with it. She's been through 18 surgeries, the most recent from UC Davis.

"It's been life changing here at UC Davis," said Elysia Jones, Lily's mother.

Lily's mouth only had about 3 millimeters between her teeth, but she now has 15 millimeters.

"It doesn't sound like a lot, but for her that's huge," said Elysia. "She ate Peanut M&M's for the first time and she said 'Mom! I love these!'"

Lily's also able to stick her tongue out, something she lovingly does to tease her brother. Her parents said they are so proud of her strength & resilience.

"She's changed our lives," said Nick, Lily's father.

While Lily's parents are grateful she is healthy on the inside, they did have concerns about bullying when she started school. So far though, they say most of the kids have been kind.

"She also stands up for herself," said Elysia. "A little boy made a comment about her arms being short. Her response was 'Well I have long legs!'"

Elysia says while she has read the Wonder book, she is waiting for her husband to finish so the family can all see the movie together.

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