By Scott Brinton
Gillian Cohen's itching ended April 17.
From birth until then, the 7-year-old had suffered from persistent skin irritation. It was much like having chickenpox all the time, without the red marks. Then Gillian received a new liver, and her itching disappeared.
So did her jaundice. Gillian's mother, Pam Cohen, says she'd never seen white in her daughter's skin and eyes before. They were always a sallow yellow.
Most important, the ever-smiling and laughing Gillian survived. The Birch Elementary School student suffered from a debilitating, potentially life-threatening liver disease called biliary artresia. It is a rare ailment. The American Liver Foundation says it annually strikes 1 in 15,000 newborns, or about 233 infants nationwide.
There is no known cause or cure for biliary artresia, though at times surgery can alleviate the disease's terrible symptoms. Gillian's only hope was a liver transplant, which she finally got at Mt. Sinai Hospital in Manhattan.
Gillian's father, Gary Cohen, says he and his wife were incredibly relieved when the operation was over. "We had this hanging over our heads for a long time," says Gary, who does marketing for North Shore University-Long Island Jewish Medical Center. "We wondered how it would go."
Gillian remembers little of the 10-hour procedure. She wasn't scared, except of the IV. She can only recall feeling warm and falling asleep. Two days after the operation, Gillian played video games for six hours. Four days later, she was pushing her mom around the hospital in a wheelchair.
Pam says her daughter's strength astounds her. "She's the bravest person I've ever met," she says, looking proudly at Gillian, who is seated by her side on their living-room couch.
Gillian is dressed in a bright pink-and-purple shirt that reflects her upbeat personality. The little girl who loves to be silly and play Nintendo -- especially the car-racing game -- never gave up hope that she would one day get a new liver.
Meantime, she and her parents became advocates and fund-raisers for the Make-A-Wish Foundation, a national nonprofit group that grants the fondest wishes of children suffering from the worst diseases. Gillian has helped raise thousands of dollars for Make-A-Wish, and for her efforts, the group honored her at its annual gala in New York City on Wednesday.
Super sales girl
Patricia Clemency, president and CEO of the Make-A-Wish Foundation of Metro New York, says, "Gillian is such a devoted supporter of our mission that we have officially dubbed her a 'Wish Ambassador.'"
Birch and Levy-Lakeside elementary schools have both helped Gillian raise money for Make-A-Wish. Gillian regularly speaks with elementary classes about her disease and the foundation, and takes part in Make-A-Wish fund-raising events. And she has raised more than $1,000 by selling plastic Make-A-Wish wristbands for a dollar each.
Pam says her daughter is quite the sales girl. Gillian is "good at going up to people and asking for money," she says. "She's a real people person."
The foundation granted Gillian's wish to take a Disney cruise ("the huge boat") when she was 4. Her eyes light up when she speaks of the trip, especially the part when she met privately with a host of Disney characters.
Pam says Make-A-Wish is "wonderful. They really make children very happy."
Beating the disease
Gillian's Disney trip served as a respite from her daily pain. Biliary artresia causes blockages in the ducts that carry bile from the liver to the intestines, so bile backs up in the body. Only certain patients like Gillian suffer from incessant itching. The medical community isn't sure precisely why. It has theorized that bile may accumulate in the skin.
The disease also results in scarring, or cirrhosis, of the liver. In many adult patients, the destruction of liver cells leads to cancer, but it's uncommon in children.
Gillian was diagnosed with liver cancer in mid-March, leading doctors to upgrade her transplant status from inactive to Level I -- most urgent. Doctors replaced Gillian's liver with that of a small, 26-year-old car-accident victim. The liver is such an amazing instrument that within two weeks of the operation, Gillian's new liver shrank to fit her body size. Now it will grow as she does.
The days and weeks leading to Gillian's operation were tense and terrifying for her parents, who worried constantly that the cancer would spread to other parts of Gillian's body before her liver could be replaced. They were unsure whether a donor would be found in time.
Pam, a life-long Merrick resident and self-described "part-time attorney, full-time mom," drew up the paperwork to become a living donor. That is, she would have part of her liver removed and transplanted into Gillian. Pam's liver would have then re-grown to its original size. Pam endured a battery of psychological and physical tests before learning that a donor had been identified.
Gillian is out of the hospital now, and will remain at home at least until the fall. Her mother is schooling her. Gillian is eager to return to Birch. For now, however, she must stay away from crowds. She takes heavy doses of medication to suppress her immune system and to keep her body from rejecting her new liver, so she has no ability to fight off any sicknesses that she might be exposed to.
In time, her medications will be reduced, allowing her to return to school and a normal life. But she'll always have to take immunosuppressive medications.
The Cohens consider themselves fortunate. Gillian, Pam says, has been given "a second chance at life."
Comments about this story? SBrinton@liherald.com or (516) 569-4000 ext. 203.
How to help grant a wish
The Make-A-Wish Foundation's mission statement is simple: "To grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."
In 2004, the foundation's Metro New York chapter granted 489 wishes of local children and hosted 186 youngsters from around the world whose wish was to visit New York City.
To learn about how to help, log on to www.wish.org.
Giving the gift of life to others
More than a million New Yorkers have signed up to become organ donors when they die. To learn how to become a donor, check out the New York Organ Donor Network at www.donatelifeny.org.
