ARCADE, N.Y. — The town of Arcade came together Sunday to celebrate a real-life hometown hero, 12-year-old Alex Heldwein, better known as "Super Alex," both for the heroic battle he has fought throughout his life and for his strong, but gentle spirit.
“Very sweet, kind, caring child,” said Alicia Zink of Rainbow's End Learning Center, where she watched Alex in daycare. “[He] just loved everybody, always there for everybody, and he still is. He’s just a very caring child.”
Alex was born with Hunter syndrome, a rare and incurable genetic disorder that affects physical and mental development. He has been hospitalized many times throughout the years, and the community has supported him and his family every step of the way.
“I was the captain of the rescue squad for a few years and had the utmost privilege of meeting Alex and the family and taking him by ambulance a few times,” said Connie Draper, Arcade Fire Department secretary and co-organizer of the parade. “They’re just a very special family, they’re great people. And it’s really hard to see what’s happening, especially when it’s a young life.”
After his most recent hospitalization at Children’s Hospital, Alex was sent home on Easter Sunday, with all options exhausted for treating his incurable disease. According to a Facebook post from Alex's mother Lisa, his family decided to discharge him from the hospital so he could spend "the remainder of his time in the comfort of [their] home." When the community learned Alex would be coming home for what may be his final days, family, friends and neighbors wasted no time planning something big for the boy who touched the hearts of so many people. As the community came together many times for Alex in the past, this latest show was nothing less than what was expected of the town.
"Arcade is just probably the best little community, the best hidden secret in Western New York,” Draper said. “Nobody understands what our community is willing to do for anybody or any member in it.”
A trail of purple, the color for Hunter syndrome, extended down Main Street to the Heldwein family home, ending with a sing-a-long in the backyard to some of Alex's favorite songs.
"There are no words to say how amazing the support has been and is going to continue to be," said Jennifer McCormick, Alex's aunt.
“To see the community come out in such big numbers in the rain is really amazing,” said David Heldwein, Alex's father. It shows how much everyone really loves and cares for Alex, and we’re very appreciative about that.”
“This community’s been a huge support system for us,” Lisa Heldwein, Alex's mother, added.
Per the decision of the Heldwein family, anyone looking to help or offer support can donate to the W. S. Davis Funeral Home to help cover upcoming costs. The family plans to keep Alex's heroic legacy alive by having his organs donated to help save the lives of others.