Back in May, Oscar Merulla-Bonn of Brighton received widespread attention when the cheerful three-and-a-half-year-old entered a nationwide contest run by The National Mobility Equipment Dealers Association.
The winner of the contest, determined by online votes, would receive a custom wheelchair accessible vehicle.
Oscar was born with Spinal Muscular Atrophy (SMA), a rare genetic disorder seen in one out of every 6,000 births. The disorder weakens his muscles, preventing him from walking, crawling, rolling over or lifting his arms above his shoulders.
Because of Oscar’s SMA, he has limited mobility and relies on a power wheelchair, or “Go chair,” as he calls it, to explore the world freely. Currently, that world is mostly limited to his home and backyard because his parents, Sally Bittner Bonn and David Merulla, cannot afford to purchase the wheelchair-accessible van that would enable him to navigate museums, parks, the Pittsford Dairy (one of his favorites) and other public places on his own.
At over 200 lbs., the wheelchair requires a customized vehicle for transportation.
Despite remaining in the top 2 percent for most of the contest, Oscar did not win the van in May, but his parents aren’t giving up that easily.
On Saturday, Oct. 6, the public is invited to support Oscar by participating in a local fundraiser entitled, “Oscar Goes: A Wheelchair-Accessible Van Benefit” at the Dyer Arts Center.
Oscar’s parents said the community’s support for their now three-and-three-quarters-year-old son has left them feeling overwhelmed, empowered, and loved. The upcoming benefit was organized by a group of volunteers called the Oscar Ensemble. Merulla calls them “the most unselfish human beings we’ve ever met.”
“We entered the contest to try to win a van, and very shortly into the contest we realized what was more important, raising awareness and educating people,” Bonn said. “I think we succeeded in that.”
For his part, Oscar has spent the months since the contest playing with LEGOs and action figures (he calls them “guys”) and having fun in preschool at the Rochester Child First Network’s Honeybee Room. He and his parents attended the Families of SMA conference in Minneapolis in July.
Merulla and Bonn chronicle those adventures and more on their blog at Oscar-Go.org
Oscar Goes: A Wheelchair Accesible Van Benefit -Three event highlights
1) The family-friendly benefit includes live music by the local five-piece jazz band Margaret Explosion (Oscar’s favorite), activities for kids, video presentation, and light refreshments from local restaurants and bakeries.
Back in May, Oscar Merulla-Bonn of Brighton received widespread attention when the cheerful three-and-a-half-year-old entered a nationwide contest run by The National Mobility Equipment Dealers Association.
The winner of the contest, determined by online votes, would receive a custom wheelchair accessible vehicle.
Oscar was born with Spinal Muscular Atrophy (SMA), a rare genetic disorder seen in one out of every 6,000 births. The disorder weakens his muscles, preventing him from walking, crawling, rolling over or lifting his arms above his shoulders.
Because of Oscar’s SMA, he has limited mobility and relies on a power wheelchair, or “Go chair,” as he calls it, to explore the world freely. Currently, that world is mostly limited to his home and backyard because his parents, Sally Bittner Bonn and David Merulla, cannot afford to purchase the wheelchair-accessible van that would enable him to navigate museums, parks, the Pittsford Dairy (one of his favorites) and other public places on his own.
At over 200 lbs., the wheelchair requires a customized vehicle for transportation.
Despite remaining in the top 2 percent for most of the contest, Oscar did not win the van in May, but his parents aren’t giving up that easily.
On Saturday, Oct. 6, the public is invited to support Oscar by participating in a local fundraiser entitled, “Oscar Goes: A Wheelchair-Accessible Van Benefit” at the Dyer Arts Center.
Oscar’s parents said the community’s support for their now three-and-three-quarters-year-old son has left them feeling overwhelmed, empowered, and loved. The upcoming benefit was organized by a group of volunteers called the Oscar Ensemble. Merulla calls them “the most unselfish human beings we’ve ever met.”
“We entered the contest to try to win a van, and very shortly into the contest we realized what was more important, raising awareness and educating people,” Bonn said. “I think we succeeded in that.”
For his part, Oscar has spent the months since the contest playing with LEGOs and action figures (he calls them “guys”) and having fun in preschool at the Rochester Child First Network’s Honeybee Room. He and his parents attended the Families of SMA conference in Minneapolis in July.
Merulla and Bonn chronicle those adventures and more on their blog at Oscar-Go.org
Oscar Goes: A Wheelchair Accesible Van Benefit -Three event highlights
1) The family-friendly benefit includes live music by the local five-piece jazz band Margaret Explosion (Oscar’s favorite), activities for kids, video presentation, and light refreshments from local restaurants and bakeries.
2) Silent auction and raffle items will include an iPad HD; a VW Camper Van Lego set; prints, photographs, paintings and jewelry made by local artists, including Sara Silvio, Boo Poulin, Andrea Geer, Andy Gilmore; gift certificates for local restaurants, including Lento, Cure, and Good Luck; a cheese making workshop; movie theater tickets for the Little; a two-night stay at a cabin in the Finger Lakes; dog training lessons; and much more.
3) The benefit is also an opportunity to support the arts, as Oscar’s artwork will be on display throughout the venue. Internationally acclaimed photographer Carl Chiarenza is donating five prints — valued at approximately $1,800 each — to be gifted to the first five individuals who donate $500 or more toward Oscar’s wheelchair accessible van.
Why you should go:
“It's going to be a fun event. It's an opportunity to help break down the barriers that disabilities can create, and it's a chance to help a local boy maximize his potential.”
—Sally Bonn
