International bond

A woman living in Massachusetts and a young boy living in Slovenia share a rare disability, and now they share a rare friendship

"Bravo!" Rhea Tavares cried. "Bravo, Tim!"

Thousands of miles away, from his home in Slovenia, a 4-year-old boy answered her with equal ebullience: "Bravo, Rhea!"

Tavares, 32, leaned closer to her computer, peering at the live webcam image of Tim Znidarsic Svensek. Moments earlier, he had proudly displayed two dinosaur action figures to his far-away friend. Now, pleased by her reaction, he was bouncing excitedly in his seat.

"He's clapping!" exclaimed Tavares. She clapped in return. Both of them clapped primarily with their elbows, since neither of them has hands.

What they do have is a remarkable relationship that has transcended the things that separate them - age, distance, culture, language, nationality. They have forged a bond that has made each of them, woman and child, feel less alone, even though they have never met in person.

"It's very special for me to know that I can help him go through life with not so much difficulty, that I can show him how to do it," Tavares said later. "I know he's not going to suffer, he's not going to feel discouraged. This is going to give him more hope, to know there is someone like me with the same disability."

After a moment, she added, "I didn't have anyone like that."

Indeed, from the day she was born in Brazil in 1975, Tavares had never known anyone else with her disability. She has an extreme variation of the rare disorder called ectrodactyly. Each of her arms ends just beyond the elbow area, with a single finger where the middle of the forearm would typically be.

Last year, from out of the blue, Tavares got an e-mail from a woman named Maja Znidarsic, who lives in the small Central European nation of Slovenia, formerly part of Yugoslavia. Znidarsic had read an article about Tavares in a Slovenian newspaper adapted from a short profile in People magazine. She explained that she had a son with ectrodactyly, and she had questions to which, she hoped, Tavares might have the answers.

"I was searching here in Slovenia," Znidarsic said in an interview with the Globe, her answers translated by a family friend, Goran Plos. "The doctors didn't know how to help me, because they didn't have any experience with this condition."

Tavares answered Znidarsic's initial questions via e-mail. Then Znidarsic sent Tavares a long letter, along with a picture of Tim. As soon as she saw his picture, Tavares knew she had to mentor him. She suggested to Znidarsic that the three of them communicate regularly over the Internet.

The first time Tavares and Tim saw each other, finding a mirror image in the world at last, both of them cried.

A mentor and a playmate

In weekly webcam sessions, Tavares began to coach Tim and his mother on how to develop life skills that would enable Tim one day to be as independent as she is. She has taught Tim and his mother such basics as how he can hold a fork and spoon, how he can bathe himself, how he can dress himself, how he can grasp a crayon or pen to draw or write - in short, as Tavares puts it, "how I do things."

Tavares has become a friend of the family, albeit a long-distance one, and, for Znidarsic, a source of reassurance that her son can lead a normal life. "I was very happy to meet someone with the same condition as Tim," Znidarsic said. "She helps him a lot. It means a lot."

Given Tim's age, Tavares has had to be not just a mentor but also a playmate. "Tim, are you going to send me a monster today?" she asked on a recent weekday after their webcam link was established. They volleyed goofy animated icons back and forth to each other, and danced in their chairs to the percussive music that accompanied the image of a dancing pig.

Tim seemed eager to show off for Tavares. He mugged, growled like a lion, brandished a small baseball bat, ate some food with a spoon. Being 4, he also stuck out his tongue at her a few times, then giggled. He e-mailed her a large pink heart, over and over. He kissed his computer screen, his cherubic face looming large. When Tim showed Tavares his dinosaurs, she e-mailed a star to him.

Tavares watched him with a near-maternal pride as the child bent over a piece of paper and drew with a magic marker, the marker clutched in his right finger and supported by his left finger.

"He's trying to write like I do," Tavares said. "I used to do that too, with my face pushed close to the paper."

Getting help for others

To see the dexterity with which Tavares can utilize her single fingers now - at one point she took a cough lozenge out of a bag and unwrapped it, then popped it in her mouth - one might never guess that at the beginning of her life, Tavares refused to use her fingers at all.

As a baby and young toddler, she learned how to do everything with her feet, including eat. But her mother saw that as a dead end. Doraci Tavares was determined that young Rhea would learn how to be independent. So she bought a tiny pair of boots, and kept them on the child at all times. Some friends and neighbors were horrified, but it worked: Rhea began to use her fingers. Soon, there was little she could not do with them.

"My mother, she's a hero," said Tavares, who lives in Everett with her mother and stepfather. At Znidarsic's request, she and Doraci Tavares talked once via webcam. "She talks about how my mother raised me very well, and said, 'I hope I can do the same with Tim,' " said Tavares.

When Tavares moved to Boston in 1993 at age 17, she lived with her mother and younger brother in Allston and attended Madison Park High School in Boston. At first she knew no English. As for carrying her books, opening her locker, taking tests: Somehow, she found a way to do these tasks. She did not know - nor was she told, she says - about services that were available to her under the state's Chapter 766 special-education law.

"In my whole life in Brazil, I never asked for help, so I decided not to ask for help here," she said.

But she now focuses on getting that help for others. As a statewide trainer and outreach coordinator at the Federation for Children With Special Needs (she is speaking at the federation's gala on May 2), Tavares helps Portuguese-speaking families with disabled children get access to services and accommodations. "She wanted to make sure other immigrant families don't miss out," said Rich Robison, executive director of the federation.

Her work with Tim is not part of her job description. File it under "labor of love." She wants to visit him in Slovenia, and conduct training sessions in his community and in the local schools. She talks enthusiastically about teaching Tim how to swim. At the moment, she and the federation are trying to raise her travel expenses.

Apart from her independence, what others find most striking about Tavares is that she consistently radiates good cheer in the face of a disability that might plunge many others into permanent gloom. "She has a very happy and optimistic personality, and she has a great attitude toward life," remarked her physician, Dr. Natasha Y. Frank, a clinical geneticist at Brigham and Women's Hospital.

She could scarcely be happier than when she is interacting with Tim. Everything he did seemed to delight her. "He's using the mouse like I use, see?" she exclaimed. And, later: "He's covering his ears like I do!" Her joy was so palpable that Robison commented: "Rhea, you're having as much fun as he is."

At one point, Tim said "I love you" in Slovenian. Tavares, fumbling a bit with the language, said it back. Tim and his mother are picking up a few words of English, and Tavares is picking up a few words of Slovenian. But in the ways that matter, they already speak the same language.

"I feel like they're part of my family now," said Tavares.

Bravo.

The Federation for Children With Special Needs has established a fund to send Rhea Tavares to Slovenia. The organization's website is fcsn.org.

Don Aucoin can be reached at aucoin@globe.com.