Tuesday, June 25, 2019 - Updated: 11:59 pm
As a businessman, Carlo Dozzi can be somewhat commanding. You know where he stands. But there is a softer side to him. He isn’t afraid to show emotion when he talks about the little girl who has touched his heart.
Giorgia Barone is 10 years old. She suffers from megacystis-microcolon-intestinal hypoperistalsis syndrome, also known as Berdon syndrome. The extremely rare disease stems from a disorder of the smooth muscle in the abdomen and digestive system. It prevents the stomach, intestines, kidneys and bladder from functioning normally.
Because her digestion is impeded, her body does not receive nutrients from food. She survives through total parenteral nutrition, which are intravenous feedings that deliver nutrients into her circulatory system via a central venous catheter.
“She’s helpless,” Dozzi said. “She has a virtually incurable disease.”
Giorgia has bucked the odds in that most infants born with Berdon syndrome die within the first year of life. Most sources list the number of documented cases in the hundreds, and so treatment of the disease is still in its early stages. Hope for a multi-organ transplant is what brought Giorgia to Pittsburgh.
Elisa Barone was seven months pregnant when doctors told her about their Berdon syndrome diagnosis. They gave her little hope that her baby would survive more than a few months. But when Giorgia was born in Rome on July 19, 2008, her perfect condition led doctors to question whether they had made a mistake in their diagnosis.
The baby was nicknamed “Pocahontas” because she had the appearance of a beautiful little princess.
But once Elisa took her baby home to Lecce in southern Italy, it soon became apparent that the original diagnosis had been correct. Giorgia couldn’t hold down food and there was swelling around her bladder. She soon entered a period of hospitalization that would last some 15 months. The use of the catheter brought a high risk of infection. As a 1-year-old, Giorgia weighed approximately 13 pounds.
Elisa noted that her daughter’s long period of hospitalization was also hard on her because it forced her to be away from her 4-year-old son, Jody. “They are my life,” she said of her children.
To make matters worse, her husband couldn’t cope with the situation and soon left the family.
But Elisa was dogged in the fight for her daughter. She researched the best known treatments and the hospitals that offered them. Giorgia’s story had become fairly well-known in Italy, and many organizations such as soccer clubs took up her cause.
When doctors told her that a multi-organ transplant was needed, she looked at facilities in London, Paris, Greece, Miami and Cleveland. UPMC Children’s Hospital of Pittsburgh was also high on the list, and support from the local Italian community sealed the decision to come here.
The family arrived in the city four years ago on a military plane provided by the Italian government. Because of Giorgia’s unique condition, the Italian government agreed to pay the transplant cost, but the family has to come up with living expenses. Elisa found a residence in Pittsburgh’s Shadyside neighborhood so she could be near the hospital. She cannot work because she is here on a medical visa and must always be attentive to Giorgia’s needs.
“She lives for her daughter and her son,” Dozzi said.
Elisa’s English has improved in her time here, but Dozzi often serves as an interpreter for her. He was introduced to the family when they took part in a Make-A-Wish function with the Pirates at PNC Park. A member of the Pirates organization who knew Dozzi asked him to serve as an interpreter.
While he just did it because he was asked, Dozzi said the relationship immediately became so much more for him.
“When you see her you understand,” he said. “She touches your heart.”
It was originally thought that the wait for a multi-organ transplant could take up to two years, but Giorgia needs a unique combination of intestines and colon that makes it hard to find a donor. No one knows when that could happen.
The first couple of years here were hard for Giorgia because she was tutored at home and had little contact with the outside world other than many hospitalizations and doctor appointments, Elisa said. The past two years, however, have been much better. Giorgia attends the Falk School accompanied by a nurse, and her hospitalizations have declined dramatically.
Elisa describes her daughter as strong-willed and always smiling. Giorgia loves to cook and hopes to be a chef or surgeon. She also loves to play with her dog, Brutus.
“She’s a funny, smart, beautiful girl who can be terrible,” Elisa said with a laugh.
She noted that when Giorgia does have the opportunity to go out she often tries to eat a little food to give the appearance of being normal.
Dozzi is known for leading many trips to Italy. With his wife, Mary, he operated Buon Sapore, an Italian import store. He was struck by the fact that the family had few people to lean on, and he noted the mental and physical toll that the ordeal was taking on Elisa. He has tried to be a father figure to Jody, who is a student at Central Catholic High School.
“I pray for a miracle,” he said.
Dozzi has joined others in supporting Elisa and her family by starting a foundation. He is organizing a fundraiser Aug. 27 at the Alpine Club in Bridgeville. The suggested donation is $100. Giorgia will attend the gathering. For information, e-mail Dozzi at firstname.lastname@example.org. Any donation would be appreciated. They can be sent to Dozzi at 11 Wellington Woods Drive, Pittsburgh, Pa. 15229, in c/o Elisa Barone, Giorgia’s Foundation.