US ski Paralympian overcomes rare disease |

US ski Paralympian overcomes rare disease

WHISTLER, British Columbia – No one knew if Caitlin Sarubbi would live through her first night.

Twenty years later, she’s on leave from her freshman year at Harvard to race on the U.S. Ski Team at the 2010 Paralympics.

Born with a very rare disease, no eyelids and several other facial deformities, Sarubbi’s journey to the Winter Games involves 57 reconstructive surgeries.

“Caitlin’s story is a miracle,” mom Cathy says with an unmistakable Brooklyn accent. “From her not living the night, hearing impaired, mentally delayed, visually impaired, to putting Harvard on hold so she could be at the Paralympic Games to represent our country is a dream come true.”

Caitlin was born with Ablepharon Macrostomia Syndrome, a developmental disorder only documented about a dozen times in the world. It includes a laundry list of disfigurements – no eyelids, tiny ears and small, curled fingers – that left her legally blind and hearing impaired.

Her first surgery was to sew her eyes shut three days after she was born so the corneas, exposed and damaged in the womb, could heal while her parents spent 10 hours a day shining a flashlight through the bandages to stimulate the optic nerve. She had seven operations to rebuild her ears, six on her hands, and one that involved taking part of her forehead out, reshaping it with bone from her mom’s ribs and putting it back, leaving her in intensive care for three days.

Surgery became a part of life, and so did hard work.

Through the operations, Caitlin maintained a high enough grade-point average to keep chasing her Ivy league dreams, and still found time to volunteer at NYU Hospital’s Craniofacial Center, helping families and kids.

“That’s how you get places in life, by working hard,” Sarubbi, who applied for a White House internship this summer, said matter-of-factly.

But it wasn’t until after the attacks of Sept. 11, after her father, a New York City firefighter buried more than a dozen close friends and co-workers, that Caitlin discovered skiing.

The family ignored the many offers that poured in for New York firefighters until one from the Disabled Sports USA foundation inviting them to a ski event in Colorado.

Caitlin, 11 at the time, was quickly hooked on the speed.

Flying down a frozen hill at up to 60 mph, visually impaired skiers rely on information relayed through a headset from a guide racing ahead of them.

“It changed my life forever,” Sarubbi said. “It was just such a feeling of freedom. I participated in sports a little bit growing up and always loved athletics in general, but for me to be able to find skiing, it was a new feeling with no limits and no disability.”

Her career goal of becoming a surgeon – because she admired the many that had worked with her – shifted. Now Sarubbi wanted to be a ski racer too.

As a high school junior she won four national titles, and in April of her senior year was picked for the US Adaptive Ski Team just two days after she received an acceptance letter from Harvard.

Still, she added to her volunteer efforts, working with the Wounded Warrior program to introduce the sport to disabled U.S. military personnel, while also raising $70,000 of the $100,000 needed for her own pre-Paralympic ski budget.

With a crowd of friends – from surgeons to firefighters – and family members cheering wildly, Sarubbi finished eighth on Tuesday, completing one part of her journey.

It still leaves her mother in tears – but also still keen to share it because she knows what it would have meant to her 20 years ago.

“People need to see the rainbow through the rainstorm,” Cathy said.

“They need to be able to say ‘My child isn’t born like I expected and there are issues and problems, but there are different avenues.’ If I ever could have imagined this was where Caitlin was going to be it would have been a completely different story on our mental status then.”

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