Rare genetic disorder doesn't inhibit outgoing boy
Survives early brush with death, grows more independent
By James Kinsella
You can see it in any successful mayor: that easy manner, that infectious humor, that unerring grasp of their constituents' names, that presence that immediately draws the eye of anyone in the room.
Brendan Pawlina had to battle for his life. In his first year, there was a question whether he would live.
So, too, can you see it in Brendan Pawlina, the unofficial if widely acknowledged mayor of Chatham Elementary School.
Walking down the corridors of the school, the second-grade student greets teachers and students alike with a friendly, ingratiating manner.
Asked by a teaching assistant Melissa O'Leary why a journalist has come to visit him, Brendan replies, "I'm going to be a star!"
"Is that why you look so dapper?" O'Leary asks.
"Yes," he replies, not missing a beat.
But just as any mayor has faced battles to get to their position, so too has Brendan.
Brendan, in fact, had to battle for his life. In his first year, there was a question whether he would live.
Brendan, 8, has what is known as Costello syndrome, an extremely rare genetic disorder. His father, Chatham Police Chief Mark Pawlina, said about only 200 people in the world have the syndrome.
Mutations in the HRAS gene cause Costello syndrome. According to Wikipedia, the gene provides instructions for making a protein that helps control cell growth and division.
Gene mutation creates permanently active protein
The mutations, Wikipedia reports, lead to the production of an HRAS protein that is permanently active," Wikipedia reports. "Instead of triggering cell growth in response to particular signals from outside the cell, the overactive protein directs cells to grow and divide constantly. This unchecked cell division may predispose to the development of benign and malignant tumors."
Common features of Costello syndrome include delayed development, distinctive facial features, heart problems and unusually flexible joints.
Another aspect of the syndrome: people with it tend to be very engaging and sociable.
Mark Pawlina said Brendan has had numerous surgeries. At first, Brendan couldn't eat, and had to fed through a tube.
Brendan spent the first 22 weeks of his life in the neonatal intensivecare unit at the Connecticut Children's Medical Center in Hartford,Conn., the area where the Pawlinas were living at the time.
Mark and his wife, Pamela, first were aware that Brendan was facing issues when he was in the womb.
"No one could tell us what was up," Mark said. "He had a lot of fluid. He had enlarged kidneys. When he was born, he was filled with fluid."
Brendan spent the first 22 weeks of his life in the neonatal intensive care unit at the Connecticut Children's Medical Center in Hartford, Conn., the area where the Pawlinas were living at the time.
"The first year of his life, we really didn't expect him to live," Mark said.
Even if Brendan lived, there was a question whether he ever would walk.
As he progressed very slowly, he finally was diagnosed with Costello syndrome, which only has been identified in the last 30 years.
Brendan, however, kept going. Mark gives a lot of credit to his teachers for his son's development.
For a long time, Brendan only ate soft food such as yogurt. Then one day, at a community dinner, Brendan's pre-school teacher showed his parents that he could and would eat spaghetti. He now often eats in the cafeteria with the rest of his students.
When he first got to Chatham Elementary School, he would walk with a walker. Now he walks independently.
Brendan spends most of his school day with his fellow students in Ann Barnard's second-grade class, going to another room for special instruction.
He spends his time in school, he said, "working." At present, that includes writing his name, and recognizing numbers, colors and shapes.
Brendan likes dinosaurs ("they scare") and "High School Musical," to which he knows all the songs. He likes books about Arthur the Aardvark and Curious George, and computer programs such as "PBS Kids" and "Caillou."
Brendan plays volleyball in gym with Melissa O'Leary, his one-on-one teachingassistant. Summarizing, Brendan said, "I get the ball over the net, andshe wins."
He also plays volleyball in gym with O'Leary, his one-on-one teaching assistant. Summarizing, Brendan said, "I get the ball over the net, and she wins."
"He's a lot of fun to work with," O'Leary said. "He has an amazing sense of humor. He's a generous kid. He's sincere. He's nice to his friends."
As befitting a mayor, Brendan also takes a wider view.
"He knows every teacher's job," O'Leary said. "He tells us what's going on. We don't have hall monitors at Chatham Elementary School, but he likes to say he's the hall monitor.
"He's just a really sweet kid," she said. "He does make our day fun."
Providing a balance for Brendan
Mia Caolo, the special education teacher who works with Brendan, said the school seeks to provide a balance for the boy, keeping him for the most part with his second-grade class where he works on skills such as listening and raising his hand, while getting individual instruction part of the day.
Placing him with his fellow classmates from kindergarten on, Caolo said, has provided Brendan with easy acceptance.
"The kids love him," she said. "They get it. They've always gotten it."
As for his developmental goals, Caolo said, "Independence is our main focus."
Back at the classroom, Brendan introduces a few of his friends: "This is Xavier, this is Destiny, Kelly, Eddie..."
A pleasure to have in class
"He's just a pleasure to have in class," said his teacher, Ann Barnard. She mentions, as others do, his sense of humor.
Despite his special needs, Barnard said, he's treated like everyone else in the class, with expectations and consequences based on what he does and how he acts.
"He's caring, he's interested, he's happy," she said. "Everyone just loves him."
Mark Pawlina said Brendan fits in well with his siblings: his brothers Jacob, 12, and Mark, 7, and his sister Madison, 10.
The boy's also a devoted fan of the family's Siberian husky, which he describes as "big, big, big, big!"
Speaking of Brendan, Mark said, "He's taught us so much about life and how we look at our lives."
Given the microscopic chance of having a child with Costello syndrome, Mark said, he and his wife would have had a better chance of hitting the lottery.
But when it comes to Brendan, Mark said, as far as they're concerned, "We've hit the lottery."