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Double the promise
Physical challenges don't stop twins from living life to the fullest

by Susan Astbury

Alixandria and Ariel Henley, 18-year-old twins, gave the same answer when asked about the greatest influence in their lives - each other.

"We've had to go through everything together and she's the only person I feel understands me completely," they both remarked.

The girls have faced unique challenges growing up with Crouzon syndrome, a genetic disorder which principal symptom is the premature fusion of bones in the skull. This prevents the skull from growing normally and affects the shape of the head and face.

Ariel and Alixandria are the only known surviving set of identical twins both born with this condition and have undergone more than 60 procedures and surgeries. They are traveling to France for more surgery and are approaching it with their typical positive attitude.

"We're going to Paris on Feb. 26 for - hopefully - their final surgery," said their mother, Monica Henley. "There are only five surgeons in the world who can perform the procedure that Alixandria and Ariel need."

Despite this, the twins are enthusiastic and upbeat. The youngest of five children, Alixandria and Ariel are members of a very supportive family in Alamo.

"Most of us couldn't think of going through everything that Alixandria and Ariel have gone through, and they've conquered it," said Joe Henley, the girl's father. "When you have something like that you have a whole new way of looking at things."

Alixandria (nicknamed Zan) is a singer and songwritter. When she was 16, she went to San Diego to audition for "American Idol," accompanied by "her very determined family."

"The Idol people said nice things to me but to wait until I'm older," said Alixandria. "It was a lot of fun. There were thousands of people in the stadium and you get 15 seconds to sing."

Afterward, she was motivated to write her own songs. "I like songwriting because you can say things that you normally wouldn't be able to say," she explained. "I usually come up with songs when I'm in the shower. Then I'll sit at my laptop and come up with all the words."

Her two older sisters bought time for her at Studio 132 in Oakland where she's recording a demo. "I'm trying to teach myself to play the piano," she said, "so I'll get a feel for how I want the song to go, and B.Z. Lewis, who runs the studio, does the instrumental stuff so we're kind of a team."

In order to overcome her fear of singing in front of people, Alixandria decided to perform at county fairs last summer. "I got first place at the Alameda County Fair in my age group, which was pretty neat," she said.

The family also drove to the California State Fair in Sacramento where she auditioned for the opening Fourth of July act. She was confident after her other fairs so she didn't prepare for the tryout.

"When it was my turn to sing I became nervous and got the hiccups in the middle of my song," she said. "I didn't get a callback, needless to say. It was a good learning experience - always practice."

Twin sister Ariel's passion is community service.

"We were asked if we wanted to start a chapter of the National Charity League where moms and daughters do charity work for six years," said Monica Henley. "Ariel and Alixandria have always volunteered. They really like working with kids."

"It was good to have two older sisters, and now we can be that for someone else," said Ariel.

She was awarded a college scholarship from Good Tidings Foundation, presented to 20 high school seniors who have selflessly served their communities in the greater Bay Area. She also received the Soroptimist Violet Richardson Award for her volunteer service.

Ariel started a mentoring program at Stone Valley Middle School where girls meet every Tuesday and talk about issues facing pre-teens. The twins also have volunteered for Tony La Russa's Animal Rescue Foundation, the Tri-Valley SPCA and Special Olympics. Alixandria assists with the special education class at San Ramon Valley High.

Elementary and middle school attendance was a challenge for the girls, due to their surgeries. "They'd try to go right back to school after the procedures and sometimes with stitches in their heads," said Monica Henley.

They attended San Ramon Valley High for awhile, then began to take independent study courses at Venture School, meeting with their teacher once a week and completing their assignments at home.

The twins graduated in three-and-a-half years. "They missed so much school that it took a huge effort to get caught up and then they just wanted to finish," said Monica Henley.

"What's inspirational about the girls is that throughout all their surgeries they have maintained a good sense of humor," said Henry Bailey, independent study coordinator at Venture. "With everything that they've gone through, they always look on the bright side of things. They're the most positive kids you can imagine."

Now Alixandria and Ariel have their sights set on college. They have been accepted to several but have not made any decisions. They both plan to pursue degrees in education.

"Teaching is a job where you can go home and feel like you've done something good," said Ariel. She plans to be a middle school English or history teacher while Alixandria is thinking about teaching special education while pursuing her musical interests.

"When you get to know young people like Alixandria and Ariel you have faith that everything's going to be OK in the world," said Bailey.

Check out Alixandria's Web site at www.myspace.com/alixandriahenley