IBDanswers

Karenlyn Barone
December 25, 2003

'Tis the season to be jolly, and an East Rockaway girl is still smiling after the Marines paid her a surprise visit last week. They brought gifts and good cheer and brightened the holidays for this homebound student, 13-year-old Tatiana S., who suffers from a chronic illness.

Fran S., the girl's mother, was in her living room when a car pulled up in front of her house on Monday, Dec. 15. She watched as a Marine got out of the car and walked to her front door. "I thought he had the wrong house," said Fran. "The first thing I thought of was, we don't have anyone in the service."

But the Marine had the right house. "Is there someone here who's sick?" asked Sergeant Roger Fortune of the 2nd Battalion, 25th Marines in Garden City.

"My little girl is sick," Fran answered, still not understanding.

"Would you mind if I came in?" Fortune asked.

Fran opened the door, and Fortune eased himself and his bundle of packages past her. Fran called to Tatiana, who was studying the kitchen with her home tutor, Eleanor Perri.

"When Tatiana saw the sergeant standing there, the first thing she said was, 'Boy, you've got really shiny shoes,'" Fran said with a laugh. "And then a few minutes later she was crying."

The marine's visit brought them all to tears. "It was wonderful," said Perri. "It was just like Niagara Falls in here. Love has been coming from all over the world for this child."

That morning, the love came from an anonymous person who got in touch with the Marines' Toys for Tots program and told them about Tatiana. The purpose of Fortune's special visit was to drop off some toys and gifts to help make Tatiana's Christmas bright. Fortune and fellow officer, Staff Sergeant Todd Lacoursiere, brought eight presents, which included a five-inch television and a hand-held video game. Tatiana opened those gifts immediately. She saved the rest for Christmas morning. "I couldn't believe it," she said. "I was so surprised and so happy."

The sergeants decided to pay a personal visit to Tatiana, so that they could see her reaction and witness her joy firsthand.

"That's what it's all about," said Fortune. "For that moment, we were able to take away everything else that was going on in her life and just bring her joy."

Tatiana is an eighth-grader at East Rockaway Junior/Senior High School who fell ill this past September. The family had taken a cruise to the Caribbean, and Tatiana complained of a headache the last night on the ship. The next morning she had heartburn. Her mysterious symptoms continued, and doctors at home thought perhaps she had a parasite. But, by the end of September, they diagnosed Tatiana with Crohn's Disease, a chronic intestinal malady.

"As a family, we were devastated," said Fran, who has another daughter, Yamileth (Yami), who is 19. "My husband and I had to educate ourselves about the disease and how to take care of Tatiana."

The bright, dark-haired teenager laughed when she remembered how they all scrambled to learn as much as they could about her condition. "When my parents told me, I listened and then asked them to leave me alone so I could run to the computer and read about it," said Tatiana. "If you ask me, it's an old lady's disease."

Crohn's disease is a chronic and serious inflammatory disease of the gastrointestinal tract that affects more than 500,000 Americans. The disease is found in equal frequency in men and women, and usually affects young patients in their teens or early 20s. It is an inflammatory bowel disease (IBD) that primarily causes ulcerations in the small and large intestines. While many other IBDs cause inflammation of the intestinal lining, Crohn's affects all layers of the intestine, not just the surface. The disease tends to be a chronic, recurrent condition with periods of remission.

People with Crohn's disease suffer from a number of symptoms, including diarrhea, abdominal cramps and pain, fever, rectal bleeding, loss of appetite and weight loss. Symptoms can be severe and debilitating, though some sufferers experience long bouts of remission in which their symptoms are mild to moderate. Crohn's disease is not fatal, and many people diagnosed with it lead active, productive lives.

"At the beginning, Tatiana's case was severe, but now she's getting better," said Fran. "A big concern was that she would miss so much school, but thanks to Perri, Tatiana has remained on the honor roll."

Tatiana has been home-tutored since the end of September, and while she appreciates being able to keep up with her classwork, she misses being at school. "My wish is to just get better and go back to school," she said. "I also want my friends to know that I am not contagious. They don't understand that they can't catch this from me."

Tatiana takes about 20 pills a day to control her symptoms, and has had to change her diet completely. "I eat lots of chicken," she laughed. "Too much chicken."

She sat at her kitchen table smiling, looking over the Christmas cards Perri had brought from her friends at school and the pictures taken with her new military friends. "Every year a new leaf grows on a tree," said Fran, "and she is going to blossom again."