Brooklyn's Caitlin Sarubbi Overcomes Rare Vision Disorder To Compete On U.S. Disabled Ski Team

NY Daily News - November 22, 2009

by Nathaniel Vinton

It's March of 2010, and a cluster of New Yorkers shiver at the bottom of a snowy mountainside in the Canadian Rockies. The group includes surgeons and firefighters, the family and friends of John and Cathy Sarubbi of Gerritsen Beach. Their classic Brooklyn accents clash with the Japanese, German, and various other languages here in the crowd at the 2010 Vancouver Paralympics.

Suddenly, a skier swoops into view high above them, zipping through a race course at Belt Parkway speeds. It's Gwynn Watkins, a former collegiate ski racer, zigzagging through the course and narrating everything she sees and does into a special microphone installed in her helmet and connected to a radio.

Just a few seconds later, John and Cathy's 19-year-old daughter, Caitlin Sarubbi, comes into view. Through an earpiece in her own helmet she hears Watkins' description of the snowy terrain.

As a visually impaired ski racer, Sarubbi is relying on a combination of her feel for gravity, the radio messages of Watkins, her guide, and a bottomless store of courage. Her downhill race at the Paralympics is just the latest milestone in her lifelong battle against a mysterious developmental disorder called Ablepharon Macrostomia Syndrome. She has undergone 58 surgeries in her life, many of them on her eyes.

There are only about a dozen documented cases of AMS in the world, and only one of them involves the U.S. Disabled Ski Team, Harvard, Brooklyn and 9/11.

* * *

It's February 22, 1990, and the FDNY has handed "probie" John Sarubbi a very special privilege: a one-day release from the six-week boot camp at "The Rock," home of the department's training center on Randall's Island. His wife is about to give birth to their first child.

When Sarubbi and his relatives arrive at Methodist Hospital in Brooklyn, Cathy Sarubbi is already in labor. Sonograms and pre-natal testing have suggested nothing out of the ordinary, and back at the Sarubbi home along the canal in Gerritsen Beach, a brand-new nursery awaits.

Then Caitlin is born. From this moment on, the Sarubbis are working without a script.

"Caitlin was born, and all of a sudden the room got real quiet," Cathy Sarubbi recalls. "I was hemorrhaging. My husband was told to call a priest."

The doctors at Methodist have never seen anything like it. The child has underdeveloped ears and contracted fingers and toes. She has an unusually wide mouth, no sweat glands, thin and transparent skin, and - perhaps most alarming of all - no eyelids. The baby's eyes are already damaged; exposure to amniotic fluid in the womb, along with the trauma of birth, has injured her delicate corneas. At best, she will grow up to see everything as if through a foggy window.

Whether she grows up at all seems unlikely.

"It was a shock - bam, it was in your face," says Cathy. "It was so bad, we didn't know if she would last the night. We didn't know if she'd be delayed. We thought she might be deaf. We didn't know if she could nurse."

Not knowing what else to do, the doctors put Caitlin under ultraviolet lights reserved for babies with jaundice, but this only contributes more to the damage of the ulcers on her dehydrated eyes. A frantic search is underway to find surgeons who can operate to save her sight. It turns out this is nobody's specialty.

By now a huge contingent of the Sarubbi family has descended on the hospital. Cathy Sarubbi, still on an IV and confined to a wheelchair, spends her waking hours desperately flipping through medical reference books, trying to find a diagnosis for her newborn daughter.

In a few days the Sarubbis find Dr. Glenn Jelks, a plastic surgeon and ophthalmologist at NYU. On the third day of Caitlin's life, he operates on her damaged eyes, stitching them closed so they can heal, and begins developing a radical plan to create eyelids.

In the meantime, the Sarubbis need a flashlight.

Humans are not born with the capacity for sight; during early infancy, the optic nerves become functional only with the stimulation of light, and the brain needs to be trained to interpret the signals it receives. And so for more than two weeks, the Sarubbis spend 10 hours a day shining the flashlight through the sutures over their baby's injured eyes.

About three weeks after Caitlin's birth, Jelks begins reconstructive surgery, taking patches of skin from Caitlin's tiny thighs and attaching them to her brows. The grafts won't work unless they are held tightly in place with a complicated helmet of medicated dressing.

For a week, John and Cathy Sarubbi can only peek through an opening in the dressing to see a bit of Caitlin. Cathy Sarubbi sees what she describes as "little sandbags" stitched to their baby's face, pressing down on the skin grafts.

Needless to say, no one is predicting a ski racer.

* * *

One autumn day 19 years later, Caitlin Sarubbi is sitting at the kitchen table in her family's house in Gerritsen Beach, having just returned from a workout at Aviator Sports and Recreation, a gym at nearby Floyd Bennett Field. Three of her younger siblings are at school, and the fourth, a two-year-old, is sleeping upstairs.

Caitlin, who is pre-med at Harvard, describes her familiarity with the operating room.

"I had surgeries all my life," says Caitlin, whose vision is now 20/400, well over the threshold for legal blindness. "It was just kind of the way life was. It didn't make life any easier. I still got scared, got nervous. I cried. But it was the norm for me. That was what I was used to."

Between ages five and seven alone, Sarubbi had seven operations to reconstruct her ears - each requiring a trip to Palo Alto, Calif. Over the years, there were six surgeries on her hands. There was also a complex operation in which doctors scraped bone from her mother's rib and used it to build up Caitlin's underdeveloped eyebrows. In May of 2008, near the end of Caitlin's senior year at Manhattan's prestigious Dominican Academy and just a few days before the prom, she had surgery, and soon flew to Oregon to train on the year-round snowfields atop Mt. Hood.

She tells a story about a training accident that occurred over the summer.

"I went all out on the last run of the day, and I hit a rut the wrong way," Sarubbi says. "It flipped me around like a 180, and then I hit another rut and caught an edge."

Her helmet hit the snow so hard the coaches heard it across the mountain. The impact of the crash knocked Sarubbi's radio out of commission, and at first Watkins, her guide, didn't realize she'd left Sarubbi behind.

"You can't really go through a ski career without a concussion, so I got mine over with," Sarubbi says.

Sarubbi's road to Vancouver will take her through Colorado, Austria, and Italy. The Paralympics take place in the third week of March. To keep racing beyond that, she'll need more funding. Her budget for the winter is about $106,000, a large chunk of it going toward travel costs and a salary for Watkins. As of November, she has raised about $70,000, much of it from groups like the Adaptive Sports Foundation and Disabled Sports USA.

But Sarubbi says she owes the most to her parents.

"My parents have always been so strong," she says. "They kept seeking the best surgeons. They did so much to keep me skiing, and help me get into Harvard."

* * *

There's a wider network of support here, too; a few blocks away from the Sarubbi home is the Tamaqua Bar and Marina, a Sarubbi family business for more than 70 years. A recent fundraiser there generated a pile of cash to support Caitlin's Paralympic quest, a good deal of it from firefighters. John Sarubbi has spent most of his FDNY career with Engine 255, Ladder 157, switching to the Marine Division about eight months after September 11, 2001.

In an indirect way, it was 9/11 that put Caitlin Sarubbi on her trajectory towards Vancouver. In the months following the terrorist attacks, FDNY was flooded with gifts and invitations from well-wishers across the country. There were concert tickets and travel offers. According to Cathy Sarubbi, her husband refused all of it.

Then the captain of Engine 255, Mikey Marr, told Cathy about an invitation to a gathering of disabled skiers in Colorado. Cathy Sarubbi insisted that they go. Her husband was suspicious that it would turn into a sales pitch for a timeshare condo.

"My husband's like, 'I'm not going, what are you crazy? It's a scam,'" she says. "And I said 'I don't care what it is, I'm taking my kids and I'm going skiing.'"

With that, the Sarubbis were off to the slopes, where Caitlin fell in love with the sensation of sliding on snow. Eight years later, she is one of the best visually impaired skiers in the country, and is fairly confident she'll be qualified for the technical slalom and giant slalom events. She's also hoping to get a crack at the high-speed downhill event, too.

"It's just so freeing to ski at speeds of that magnitude," she says. "The elements, and nature, and to be part of something like the U.S. Ski Team and the U.S. Paralympic Team, and to represent my country in that way. It's awesome, I love it."

She's not the only one looking forward to March; as of this week, some 23 people make up the Sarubbi contingent that will make the long, expensive trek to British Columbia to see Caitlin compete. The group includes doctors who have become close family friends, firefighters who remember when the outlook was bleakest, and Caitlin's grandmother, who is hoping to hear the "Star Spangled Banner."

There will be plenty of supporters back in Gerritsen Beach, too. But it will be a special thrill to stand among the Brooklyn crowd at the finish line when the announcer signals Caitlin Sarubbi is on the course, and the whole group looks up the frozen slope and sees her appear on the horizon, still writing her own script.