From the Nevada Appeal, January 22, 2008
Miracles happen every day. So they say. But what if you’re a family in need of multiple miracles? Such is the case with the Harris clan in Carson City. Their problem was simple – and yet seemingly unsolvable. Their daughter Ashlee, 7, a first-grader at Mark Twain Elementary, was born without a smile. That’s right. She couldn’t smile.You see, Ashlee came into this world without the nerves and muscles in her face to crack a smile. It’s called Mobius Syndrome, a rare birth defect caused by the absence or underdevelopment of cranial nerves that control eye movement and facial expression. No matter how much mother Amy tickled and cooed and cajoled; no matter what little multi-colored sprites danced on the mobile that hung above her infant head, Ashlee wasn’t physically able to grin, smirk or even scowl.“When you have a child – as a parent – all you do is hope that they’re healthy, and happy,” Amy said. “You want everything in the world for your children, and you’ll do anything.
“Having a little girl that has so much life and energy, and can’t smile, well -it just breaks your heart.”
Local doctors were perplexed, and it wasn’t until the Harris family visited University of California, San Francisco Medical Center that Ashlee was diagnosed. But even they didn’t have an answer for the Harris family – not right away at least.“They said there’s nothing they could really do,” Amy said.She was inconsolable.
“It’s exhausting,” she said. “Here you have this problem that you think is fixable. And it’s not something you can really talk about with other people … ‘my child can’t smile’ – and you know what kids are like. It’s so hard when your child comes home with questions, every day – it was just a very sad experience for a parent.”
Finally, they found a solution.
Last June, Ashlee underwent an eight-hour surgery at UCSF performed by Dr. William Hoffman, chief of the school’s division of plastic and reconstructive surgery. The procedure was called a “cranial re-animation.” Surgeons removed nerves and muscles from Ashlee’s thigh and transplanted them to her face through an incision behind her ear.
The surgery was a success, but Ashlee’s story is not over. She still has “smile exercises” to practice daily, which help strengthen the nerves in her face.Even so, her condition afflicts her eyes as well, as she’s never been able to move them back and forth.“As much as we’re overjoyed that our little girl can smile, we still haven’t found a (surgeon) that says they can help with her eyes,” said Amy, a medical receptionist.Stepfather Tim Harris, a salesman for the Kirby Company, stayed at home with Ashlee’s brother, Kyle, 14, while the surgery and recovery took place.
“It was a family effort,” Tim said. “It’s just something we knew we had to do and we were lucky enough to live in a (region) where we could find someone that could help.
“But it’s taken a lot.”
The Harris family has insurance, and because Ashlee’s condition was congenital, Tim and Amy anticipate some of the surgery and recovery costs will be covered – but not all. The couple anticipates a six-figure tab.
And so, this Saturday, along with the help of local hypnotist/comedian Dan Kimm and the Galaxy Fandango 10 Cinema, the family will host a benefit fundraiser for Ashlee.
“They’re such a giving family,” Kimm said. “And, as a performer, you always have to remember to give back to the community. Some people give money, some give time – if I can volunteer a little bit and get families to come out, enjoy themselves and laugh – well, that’s basically the best I can do.”Ashlee, on a recent weekday night, was playing with a Barbie car she’d just gotten for her birthday and noshing on a Dorito.While she said the surgery went “good”, she was reluctant to share many details.Until, of course, she was asked what her relationship was like with her doctors.“Go ahead, tell them Ashlee,” Amy said.
“Well,” Ashlee said, as a grin spread across her face. “I made them laugh. I made them smile.”