Overcoming disease, Merrick teen inspires
Gillian Cohen is a great friend of our chapter and speaks at our annual events. We appreciate and have enjoyed being there a Gillian has grown to be an eloquent young lady and a dedicated volunteer speaker and advocate for organ donation and transplantation.
The following article was published in the Long Island Herald in 2014:
Gillian Cohen, with her parents, Gary and Pam, at the Long Beach Polar Bear Super Bowl Splash, which raises funds for the Make-A-Wish Foundation. Gillian, a liver transplant survivor, is a “Wish Ambassador” for Make-A-Wish and was recently honored with the U.S. Tennis Association Eastern Section’s Service to/People with Disabilities Award.
Gillian Cohen was just 7 years old when she received a life-saving liver transplant, but she has never forgotten it.
Now a junior at Calhoun High School, Gillian spends much of her time working to help ensure that others in need of organ transplants get the same second chance at life that she did. The list of public venues in which she has spoken about the importance of organ donation has grown.
“She’s spoken at North Shore LIJ Hospital, she’s spoken at Winthrop Hospital, she’s spoken at Temple Beth Am, she’s spoken at Calhoun High School, she’s spoken at assisted living facilities … she’s spoken for New York Organ Donor Network,” her mother, Pam, said. She also recalled “organ donation speeches” her daughter gave at Yale University, St. Patrick’s Cathedral, in a TV interview and at annual ceremonies the Transplant Recipient International Organization holds for organ donor families in Eisenhower Park.
Gillian is especially fond of the Make-A-Wish Foundation, which sent her and her family on a Disney cruise when she was 4. Today Gillian is a “Wish Ambassador,” promoting the organization’s mission at fundraisers, like this month’s Long Beach Polar Bear Super Bowl Splash, and logging hours as a volunteer in its Lake Success office.
“I’ve just been friends with them ever since” the Disney cruise, she said. “They’re like a big family.”
Gillian was born with biliary atresia, a rare liver disease that affects one out of every 18,000 infants, according to the National Institutes of Health. Hepatic ducts do not properly form in infants born with the disease. As a result, bile builds up in the liver, causing jaundice, tissue damage and cirrhosis. In short, Gillian needed a new liver. In 2005, when she was 7, doctors discovered a cancerous tumor in her liver, and they upgraded her to the highest-urgency status on a transplant waiting list. About two weeks later, Gillian underwent a 10-hour operation at Mt. Sinai Hospital in Manhattan, in which she received the liver of a small 26-year-old car-accident victim.
The surgery was a success. Gillian’s father, Gary, told the Herald weeks afterward that he and his wife were incredibly relieved when it was over. “We had this hanging over our heads for a long time,” he said.
The transplant was just one of 19 surgeries Gillian has endured due to a range of health issues she has faced since birth. Remarkably, she has now recovered well enough to have a life much like a typical teenager. She enjoys hanging out with her friends and going to movies. Tennis has been a longtime hobby — she began taking lessons at North Merrick’s Carefree Racquet & Health Club in elementary school, and still trains there — and last fall she was on the girls’ junior varsity tennis team at Calhoun, the first time in her life she was able to participate in a school sport.
“My friends started playing tennis for the school, and I was taking lessons, so I’m like, why don’t I give myself a shot and try to make the team in high school?” Gillian explained. “It would be a really cool opportunity and experience to say that I’m a part of a team.”
Contact sports are strictly forbidden, but her doctors and parents said that tennis was a sport she could play as long as she took proper precautions. She must wear plenty of sunscreen, because the immuno-suppressant drugs she takes to prevent her body from rejecting her transplanted liver increase her chances of getting skin cancer. She also has to avoid any impacts to her abdomen.
“During sports I’m very aware,” Gillian said. “I tell people, ‘Please don’t hit my stomach, because I’ve had a transplant. If something bad happens… I could possibly be going back to the hospital.’ So I make everybody aware of that, and then they’re always cautious.”
Pam said that playing for the tennis team has been very positive for Gillian. “It’s very social, and you learn a lot — it teaches you perseverance, and teamwork is great,” Pam said. “So she was just so thrilled to be able to be part of the team, that whole experience, which she never had gotten to do before … and just showing that even though you face these challenges you can still participate.”
It was Daniel Burgess, Gillian’s tennis coach at Carefree, who decided that Gillian might be a good candidate for the U.S. Tennis Association Eastern Section’s Service to/People with Disabilities Award. Unbeknown to Gillian or her parents, Burgess nominated her for the award — and surprised her with the news after the association chose her in December as its recipient.
On a snowy Saturday night in late January, the Cohens traveled to the Renaissance Westchester Hotel in White Plains for the USTA Eastern’sawards celebration and dinner. Gillian was the youngest person to be honored in any of the USTA Eastern’s 24 adult award categories in 2013.
“I was very honored to be nominated, and I couldn’t ask for anything better than that,” she said.