A Rutland Town 7-year-old has a safe new deck so he can easily reach his backyard thanks to the help of Make-A-Wish and local contracting companies that came together to provide it without charge for his family.
Nolan Erwin has a rare genetic disorder, that is one of the congenital disorders of glycosylation, also known as CDG, according to his father, Eric Erwin.
“We’re kind of learning about it as we go along as well as most doctors and specialists that we work with between Boston and Dartmouth. We’re the only ones in the state of Vermont and then, I think, one more (case) in New Hampshire,” he said.
As a result, Nolan has had problems such as seizures, and breathing and eating difficulties since he was an infant. He also suffers from a visual disability.
But Nolan loves being outside and spending time with his siblings.
Eric Erwin said the family had originally contacted the staff at Make-A-Wish Vermont with a wish for Nolan to visit Florida. Eric Erwin said he and Brittney Scott, Nolan’s mother, ultimately decided that wasn’t the right wish because of the pandemic. In addition to the travel restrictions, the family had to be sure Nolan wasn’t exposed to COVID-19.
“We decided we needed something for him, space-wise. He’s always at home, we don’t go anywhere and we have a poor yard you can’t really have a wheelchair on,” he said.
The idea came up that a deck could help Nolan spend more time outside with his family.
“Everyone seemed to jump on board very quickly. I think from start to finish it was a couple of weeks between being an idea and being finished. It was amazing,” Eric Erwin said.
Vic Shappy, owner of VMS Construction in Rutland, said he was contacted by Make-A-Wish staff about making Nolan’s wish come true. He donated the concept and design and about half a dozen workers from his company did the construction work last month. Shappy said the work took about two days.
“It was great. It was pretty heartwarming. I think my guys really enjoyed it. We’re proud to be involved with it. It was cool. It was fun,” he said.
The result, Shappy said, was a 12-foot by 16-foot deck with a rail and stairs. The rail is made of wood with stainless steel cables so that they don’t obstruct Nolan’s view.
Shappy said he was invited by Dave Wolk, former president of Castleton University and superintendent of the Rutland City Schools, who is a neighbor, to be part of the wish project. When he learned more, Shappy said, he realized he was related to Scott, Nolan’s mother.
“It was kind of a coincidence, but it was kind of neat. Obviously, I said, ‘Yeah, we would get involved,’” he said.
When Shappy contacted r.k. Miles, he explained what VMS would be doing and why. He said Dave Seward, sales manager for Miles, told him the Manchester-based building materials supplier told him that if VMS was donating the labor, they would donate the materials.
Seward said r.k. Miles has a history of giving back to the community “quietly, in the background, trying to help people.”
“It’s a good feeling. (The Erwin family have) a lot of challenges going on. I was there a few days before everything started and I went home feeling pretty good that we were going to help this family out,” he said.
A release from Make-A-Wish pointed out the contributions from VMS and Miles were valuable not just because they were donated but because contractors and building supplies are challenging to find now.
Eric Erwin said the deck comes right to the back door of his Rutland Town home, making it easier to bring Nolan outside.
“He’s got four other siblings. He loves listening to them, yelling, screaming, crying. He has a great time with that, any sound he’s able to capture,” he said.
Nolan also enjoys listening to wind chimes and the birds who use the feeders in the yard, but Eric Erwin said the real goal for the deck was so Nolan could spend more time with his family.
He said the deck was “fantastic” and he considered it a blessing for a family dealing with so many issues.
“Maybe a week or two ago, we put him outside on the couch. We have a little furniture that they had given us a budget for. We were out there until 11 p.m. He fell asleep on the couch under the stars. It was just peaceful,” Eric Erwin said.