Her brother, Dean Weber, also has psoriatic arthritis, but he developed it in his late 30s. Amy said she immediately recognized the symptoms in Shane, and was convinced he had the same condition. “I went to at least 20 different doctors and nobody believed me,” she said.
Finally, a rheumatologist at North Shore-LIJ agreed with her, and told Amy that Shane was the youngest patient he had ever known to have the condition. It is stabilized with various medications, and Shane underwent physical and occupational therapy to help him with basic tasks, like holding a pencil. Every six weeks he visits Cohen’s Children hospital at LIJ for a checkup.
Legos, Amy believes, played an invaluable role in Shane’s growth. “It really helped his dexterity, and I think that’s why he’s able to be so nimble,” she said. “Doctors always said it’s very important for his fine motor skills.”
And thus, Shane said, it was a fitting theme for his bar mitzvah. “It’s been my hobby for my whole life,” he said.
He also asked attendees to bring stuffed animals and books, which he plans to donate to young patients at Cohen’s Children’s Hospital with juvenile rheumatoid arthritis, who must stay at the hospital for extended periods of time, unlike Shane. “I wanted to help them,” he said. “I’d go to the hospital and I would see them … and they wouldn’t be able to leave.”
He was inspired by his older twin brothers, Jake and Jesse, sophomores at East Meadow High, who also collected toys and books for children with arthritis during their b’nai mitzvah two years ago.
But the talk of Shane’s party was the Legos. “Before the party,” he said, “there was this family … for an hour, they were just staring at the Taj Mahal, asking me questions about it.”
Dale Ettinger, who has been a family friend of the Weiners for a dozen years, said, “When you walked in, the Taj Mahal was right in front of you, all lit up, encased in this beautiful Plexi. It was hard to believe that it was even a Lego piece. It really took your breath away.”
Moving the pieces from the Weiners’ home to the catering hall was no easy task, involving many boxes and a lot of bubble wrap. The New York Funk Factory, an event production company headed by Lori and Chris Laybourne, helped transport the works.