Whats Western New Yorks best asset? The waterfront? The 20-minute commutes?
Ben Botwin has learned the answer, but at 12, with blonde hair, a few freckles and the mischievous smile of a boy about to enter seventh grade, the words are a little tough to coax out of him.
You can see the answer in the photo Ben keeps of a girl named Sofia, little more than 3, who saved up her chore money for him. You can see it in the handmade oversized check he kept from a teenager named Wendy who turned her Sweet 16 into a fundraiser. You can see it as he flicks through photos on Facebook to show off the compassion of strangers during a family garage sale that grew into a neighborhood campaign to raise money to renovate Bens house.
It just amazes me the kindness and generosity that are in this community, said Bens mother, Laurie Werbow.
Ben has Duchenne muscular dystrophy, a genetic disorder that will weaken his muscles as he ages. There were years when he could get away with not telling the other kids in school, when he didnt need a wheelchair and didnt need to explain why he got to take the elevator.
Those days, though, are waning. His heels no longer touch the ground as he walks, pushing him onto the balls of his feet and placing strain on other muscles. Most days, outside his home, he uses a red motorized wheelchair, decked out with a license plate with the words Banshee on the back.
His mother knows, eventually, he wont even have that freedom; and that when that happens, his home will become his entire world. She worries their modest house in Amherst with the bathrooms and bedrooms on the second floor wont accommodate his changing life. As his disease progresses, his life is shrinking, Werbow said.
She and her husband are doing all they can to make Ben comfortable as his muscles degenerate. They plan to take out a loan and use savings toward modifying the house. Werbow, a respiratory therapist, has taken on extra work in addition to her full-time job.
But it hasnt been enough; and so, like others in their situation, their family turned to the kindness of strangers. They planned fundraisers and set up a website, ahomeforbenny.org, and hoped for the best. What they found like so many others facing hardship was that people in Western New York can really step up.
There were the folks at Crossroads Lutheran Church. There was the crew from Tree Services of Western New York that cut down two giant maples to make way for the renovation. There is the team at Kaz Brothers Construction that took on the project despite the difficult financing arrangement. There were the owners of the Ramada who agreed to provide space for a benefit after another venue fell through. The list goes on.
Ben will still need more help to get the project off the ground. His disease will eventually rob him of his ability to walk. It will steal from him the newfound freedom and independence of young adulthood.
But, for now, Ben is just a 12-year-old boy, happily making model rockets and shooting air guns and studying classic cars. For now, Ben is thinking about starting seventh grade. For now, he is thankful for all who have helped him. And hes learned, firsthand, of the best asset of Western New York by far, the generous spirit of the people here.
email: djgee@buffnews.com
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