In her mind's eye, Caitlin Sarubbi sees the day at Whistler Mountain next March when she's high-fiving friends and hugging her family, a Paralympic medal hanging around her neck.
Not for Sarubbi, who's as good at beating the odds as she is at gliding down a slalom course.
The 19-year-old Brooklyn native was born with Ablepharon Macrostomia Syndrome, an extremely rare condition that causes a long list of disfiguring abnormalities, including missing lower and upper eyelids, miniscule outer ears, and claw-like fingers. She is also legally blind and hearing impaired. But even 56 reconstructive surgeries couldn't stop Sarubbi from entering Harvard as a pre-med student and capturing five national alpine skiing championships.
As she departed for a training camp in New Zealand this week, Sarubbi was counting the days until the 2010 Vancouver Paralympic Winter Games, where dozens of family members and friends will watch her ski in the biggest race of all.
"When I think Vancouver is seven months away, I get all nervous. It's like seven months isn't enough time,'' said Sarubbi, who's ranked third in the world in slalom and sixth in both downhill and giant slalom.
"But every day, if I focus on what I can do to better myself as an athlete that day, then there's plenty of days until Vancouver. That's how I like it, that's how I look at it.''
Sarubbi is too intent on looking forward to spend a lot of time looking back, even though AMS profoundly altered her life. There are only 13 reported cases of the syndrome in the world, and not much is known about its cause or progress.
Sarubbi's mother, Cathy, first knew something was wrong by the startled response at Caitlin's birth.
"The doctors had never seen anything like it,'' she said. "We thought she was going to be deaf, we thought she was going to be mentally delayed, we thought she was going to be blind, we thought she wasn't going to live through the night. No one knew what the condition was.''
For Sarubbi the only solution was extensive and grueling surgeries over the years to create eyelids, enlarge her ears, reshape her mouth, and rebuild her cheeks. It didn't end there, either.
"Four years ago, they had to cut into my skull and take out my forehead,'' Caitlin said. "They reshaped it and put it back in - to create a brow bone, basically. I was in ICU (intensive care unit) for three days. They were basically all high-risk surgeries.''
Yet Sarubbi's childhood was a healthy mix of schools, sports and social activities with her four siblings and friends in Gerristen Beach, Brooklyn. She swam, played softball, earned A's, and attended her senior prom just five days after undergoing yet another procedure.
"She still had sutures on the side of her mouth and was all swollen. We put a lot of makeup on her and off she went to the prom,'' Cathy said.
"In this society today, everything is pretty much based on what you look like. The next thing is your intellect and what degrees you have. That was God's gift to her. She's very bright. And then we found out she was very athletic, too.''
Sarubbi's father, John, is a New York City firefighter who spent hours at Ground Zero on the day of the terrorist attacks. He returned home to shower and nap, then headed back to Ground Zero, where he spent much of the next six weeks sifting through the rubble, helping recover the bodies of men he knew and worked with.
"This is a man who never shed a tear when his wife and baby were going to die,'' Cathy said. "But when he came home from the pit and saw his kids come running down the stairs, he just lost it.''
After 9/11, the Disabled Sports USA foundation invited the Sarubbi's to its annual Ski Spectacular in Breckenridge. Colo. Putting on skies for the first time, Caitlin discovered that she was a natural on the slopes - and a speed junkie.
"For me to be able to go that fast down a mountain on a pair of skis ...well, it was like nothing was stopping me. It was freedom. I can go as fast as people go in cars,'' Caitlin said.
"As I got older I got into this whole adventure seeking personality. All of it kind of blossomed out of 9/11.''
As a high school junior, Sarubbi won four national championships, attracting the attention of national coaches. Intent on attending an Ivy League college, she often studied until 2 a.m. and got up at dawn to hit the books again.
In April 2008, she received her admission papers from Harvard. Two days later she was named to the US Adaptive Ski Team.
"In those two days, everything I'd worked for came true. It was pretty amazing. I refer to it as my best week ever,'' she said.
"I always knew I was different,'' Sarubbi added. "But I never really had issues with bullying and anything like that. I always had this perception of being like everyone else. That's how I put myself out there with people and that's how they treated me.''
Sarubbi is taking off a year from Harvard to train full-time for the Paralympic Games, the first time she hasn't juggled skiing and school.
Because of her 20/400 vision, she must rely on her guide, Gwynn Watkins, to show her the way. It isn't easy keeping up with Sarubbi, says Watkins.
"She's only been on the team for a year, only been training full-time a year, and she wants to beat the veterans,'' Watkins said.
"Caitlin knows what she wants and she does everything possible to make it happen. She immerses herself in the task. She is constantly in the gym. Right now she is reading three different books to prepare herself.''
Sarubbi relishes the work.
"It's funny,'' she said. "My goal my whole life was to get into a good college and become a doctor. Then I discovered this whole world of adaptive skiing. And it changed my life.''