Twelve-year-old Sean Fennelly testing his new “boat-costume”; it is custom-designed and hand-crafted for attachment to Sean’s wheelchair. Photo by Bob Becker
When the 66th annual Vienna Halloween Parade steps off at 7 p.m. on Oct. 24, a very special 12-year-old will parade down Maple Avenue for the first time in his life. Riding in a custom-designed, custom-handcrafted “boat” attached to his wheelchair, Sean Fennelly, aka Captain Chaos, will watch spectators waving to him in the event that he himself has watched from the curb every year.
Sean, a smiley, vivacious child, has Angelman Syndrome, a genetic disorder that primarily affects the nervous system.
The boat-costume was the brainchild of Sean’s grandfather, Bob Becker. The doting granddad collaborated with longtime friend Vito Florimonte, who built the Masonite enclosure in four hours.
“I asked myself, ‘what would really intrigue Sean,’” Becker said. “He loves water, and then, it occurred to me to build a boat for him to use in the parade.”
Becker and Florimonte, Vienna friends of more than 30 years, belong to the same Oakton church, St. Mark’s Catholic Church, and the same Knights of Columbus affiliation in Fairfax. They have shared in each other’s families’ lives over the many years, and, when Becker knew he needed the expertise of a craftsman, he turned to Florimonte. In early October, Becker brought his idea to Florimonte. In a week, the “boat” was designed, constructed and painted. A mini life preserver hangs on one side and on the “boat” is printed Captain Chaos.
“Vito had the construction design figured out in four or five minutes,” said Becker.
With Florimonte’s bill of materials in-hand, Becker shopped at the Home Depot at Fairfax Circle. When the staffer there heard that Becker needed a sheet of Masonite cut down for use by a disabled child, the employee did the cutting at no charge, something that touched Becker. Masonite, said Florimonte—an engineer by profession—is flexible, a material that allowed him to form the boat’s bow.
By late evening on the same day, all the needed materials were at Florimonte’s home.
“When you work with the materials for so long, you understand how they work,” said Florimonte, who has been woodworking since 1968.
Angelman Syndrome (AS) is a severe neurological disorder characterized by profound developmental delays, problems with motor coordination, no development of functional speech and seizures. It is estimated that AS affects one in 15,000 births.
Most affected children have recurrent seizures, as Sean does, but maintain a happy demeanor. Many individuals with Angelman Syndrome are attracted to water, as is Sean.
Sean is one of the more severe cases of Angelman Syndrome, his mother Ann Marie Becker Fennelly said.
Sean is completely non-verbal. His receptive communication skills, however, are much stronger than his expressive skills, his mother said. He needs full assistance with the routines of daily life. “Despite these challenges, he is a very happy child with a contagious smile and laugh,” said Fennelly. “He has enriched our lives more than words can say.”
It has always been a challenge for Sean to participate in Halloween-related activities, such as trick-or-treating, Fennelly said. “His granddad thought that the perfect way for Sean to feel included this year would be to custom-make a costume that would fit onto his wheelchair.”
Sean enjoys social interaction and activities and loves anything water-related, from a pool to the ocean. One of his great joys is to ride on his Granddad Bob Becker’s boat. He loves parades, including the music and commotion, and cheering crowds. “The louder the better, which is one of the reasons Sean has the nickname ‘Captain Chaos,’” said Fennelly.
Since Sean does not eat candy, his most favorite Halloween-related event is a parade, his mother said. Fennelly knows that Sean wants to be in the parade by his gestures. “When they wave to the spectators, Sean thinks they are waving to him,” Fennelly said.
The Beckers have attended the Vienna parade since Sean’s own mother was a young child. “So many people who live in Vienna know him and will be excited to see him participate,” Fennelly said.
66th Annual Vienna Halloween Parade
Parade steps off at 7 p.m., Wednesday, Oct. 24, on Maple Avenue. Maple Avenue closes down at East Street to Center Street at 6:45 p.m. and reopens at 9 p.m. The parade starts at Branch Road.
Theme for 2012 is "Celebrating Holidays Around the World," and Grand Marshal is Santa Claus. There are approximately 100 entries, including the Redskins band, and local school bands and dance teams. Costumed children can march together, meeting at 6:30 p.m. in the parking lot of Virginia Commerce Bank, 374 Maple Ave., East.
The Vienna Halloween parade is sponsored by the Tysons Regional Chamber of Commerce and the Town of Vienna. For more information, go to http://www.viennaha….
Ann Marie Becker Fennelly graduated from Vienna schools and met her husband at St. Mark’s. She is the oldest of Kathleen and Bob Becker’s five children. The Fennellys have three children younger than Sean, the Becker’s first-born grandchild.
In early October, Sean took 20 steps independently, and his family is hopeful that he will one day walk without assistance.
On Oct. 17, Sean and his parents arrive at Tampa General Hospital where Sean will begin the first human clinical trial for AS. Just 24 children worldwide were selected for the clinical trials. Sean will be treated with minocycline over a period of several months. Researchers believe that treatment for Angelman Syndrome is likely.
“Minocycline could potentially improve Sean's seizure control, motor skills, memory and cognition,” said Fennelly. “This is a very exciting time in Sean’s life.”
The compound administered to a mouse model of AS, after three weeks, showed a significant decrease in motor deficits and an increase in long-term learning and memory.
“These children teach us the greatest lesson of all, which is humanity,” said Sean’s grandmother, Kathleen Becker. “I think we’ve learned a lot more from Sean than he’s learned from us.”