THANK YOU ALL FOR YOUR GENEROSITY! WE LOVE OUR VAN!!!

Oscar Goes!

A Wheelchair-Accessible Van Benefit

5-8pm Saturday October 6, 2012

Dyer Arts Center, NTID, RIT Campus

52 Lomb Memorial Drive, Rochester, NY

PARKING: Please park in Lot L, adjacent to the Lyndon B. Johnson Building. The Dyer Arts Center of NTID is located within the Lyndon B. Johnson building. Reserved spaces for the disabled are available immediately in front of the building. Downloadable map:  O – RIT Campus Map w_parking directions

Join us for an evening of music, art, fundraising and fun as the Rochester community comes together to support Oscar—an amazing little boy whose courage and passion for exploring the world in the face of spinal muscular atrophy are nothing less than awe-inspiring.

Come by for all or part of the evening, which will include:

• the unique jazz sound of local five-piece ensemble Margaret Explosion
• silent auction and raffle
• 2 special raffles: an iPad and a VW Camper Van Lego set
• ‘kids zone’
• video presentation
• light refreshments from local restaurants and bakeries

Silent auction and raffle items include 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 theatre tickets for the Little; a 2-night stay at a cabin in the Finger Lakes; dog training lessons; and much more!

Internationally acclaimed photographer, Carl Chiarenza, is donating five prints of Oscar 58, 2010 (valued at $1,500 each), to be gifted to the first five individuals who donate $500 or more toward Oscar’s wheelchair accessible van.

For a list of participating silent auction sponsors please visit our sponsors page. If you are not able to attend the event but would like to make a donation, you can do so online through PayPal or by check. Please visit the donate page for more details.

ADDITIONAL INFORMATION ABOUT THE EVENT:

There is no minimum donation.

Check and cash are the preferred methods of payment/donation. In addition, credit cards will be accepted at the event.

FREQUENTLY ASKED QUESTIONS

Why does Oscar need a van?

Oscar uses a power wheelchair, because he has spinal muscular atrophy, type II (see the About page for more info on SMA). Without access to a van to transport his power chair, Oscar is not able to be fully independent outside of his own neighborhood.

What kind of van does Oscar need?

Oscar needs a fully wheelchair accessible van (a mini-van is large enough for his needs), complete with a built-in ramp, lowered floor to provide plenty of headroom for growth, and tie-downs to secure the chair in place while in transit. His wheelchair is not at all collapsible, and it weighs over 200 pounds!

Is there any financial support provided by government programs?

Yes. Oscar has Medicaid, in addition to his family’s primary health insurance. Because he is disabled he is eligible for the Medicaid Waiver program. Medicaid will pay to convert a standard van, as long as the van is fewer than three years old and has fewer than 50,000 miles on it. (This program is not available to everyone. The Merulla-Bonns sure are lucky to live, not just in New York State, but specifically in Monroe County).

How much does a wheelchair accessible van cost?

A new, fully wheelchair accessible van can cost anywhere from $40,000 to $65,000. However, because Oscar needs a standard minivan that can then be converted, the van Sally & David will buy will likely cost between $20,000 and $30,000.

Does a van for someone with SMA differ from those of other accessible vans?

No. There are different ways to convert vans, and many details to be considered in the process (side entry or back entry, for example), but none of these decisions are specific to SMA. Decisions are made based on the kind of wheelchair, and on function as well as preference for each individual user.

Will the van be purchased already converted, or do you need to buy one and have it converted?

Because Medicaid will cover the cost of the conversion, the most cost-effective way to get a van is to buy a regular minivan and then have it converted.

Will Sally & David be trading in one of their existing vehicles?

No, Sally and David only have one car. It’s a used Honda Civic that wouldn’t give them a huge return on trade, and their lives would be much simpler if they could keep it. Because of Oscar’s school schedule, therapy schedule, and frequent doctor’s appointments, having only one vehicle is becoming more complicated.

Will Sally & David be able to finance a portion of the van?

No. They will just barely be able to afford the insurance on the van. They will not be able to take on a monthly payment for the van at this time.

How much money needs to be raised?

$20,000-$30,000.

What color van does Oscar want?

Blue!

Where are Oscar and his family looking forward to being able to go in the van?

Preschool, the library, Wegmans, Strong Museum, Pittsford Dairy for ice cream, Mendon Ponds Park, the accessible playground in Penfield, birthday parties, the Lego store, the public market, to the swimming pool, and on trips to see other parts of our state, country and world! The list could go on forever!

If I can’t come to the benefit, can I still donate?

Definitely! Click on the donate page to see how you can donate by check, credit card, or paypal.

The NMEDA “Local Hero” Van Contest

Earlier this year Oscar and his family entered into the National Mobility Equipment Dealers Association wheelchair-accessible van contest. Oscar made it into the semi-finals, with over 20,000 votes registered. During this time, the Merulla-Bonns became aware of what was even more important than winning a van: raising awareness for SMA and disability rights. They had a wonderful opportunity to do this, through several media outlets.

News coverage for Oscar:

Brighton-Pittsford Post article and video

Channel 10 News story and video

Democrat & Chronicle Blog Post

Channel 13 news story

Here is the entry essay Sally & David submitted for the NMEDA contest, offering additional information about why a van will have such a positive impact on Oscar’s life.

Oscar, our three-year-old son, loves the world. Ever since he was a baby, he has been wide-eyed, taking in everything around him, and listening carefully. Oscar laughs, tells jokes, makes us laugh, asks questions about the world that surprise us, like “Why do words come out of our mouths?” or “Mama, did you go to college to learn how to be a mom?” He correctly uses words like concentrating, appropriate, submersible, adjust, and version. He draws pictures with the accuracy, creativity, and detail of a child twice his age. His personality is magnetic. Everywhere he goes he makes people smile. He draws people in. We are constantly humbled by how much the world loves Oscar.

At fourteen months, Oscar was diagnosed with Spinal Muscular Atrophy (SMA), a genetic muscle-weakness disorder akin to Muscular Dystrophy. Oscar’s muscles are much weaker than those of a typical three-year old. He can’t walk, crawl, roll over by himself, or lift his arms above his shoulders. Despite these significant limitations, he has always been content and easy-going. He has never allowed his physical challenges to limit his imagination or curiosity.

In March, just weeks ago, Oscar got his “go power chair,” a motorized wheelchair, which he is already driving with skill and precision. He can now fully explore our house and yard, play tag with the neighbors, zoom in and out of rooms and to or away from us; he is able, therefore, for the first time, to truly assert his independence. However, this over 200-pound chair won’t fit into our sedan. Oscar is stuck relying on others to push his stroller or manual wheelchair at preschool, at birthday parties, at parks and museums—wherever he goes. In order for Oscar to explore the world beyond his own backyard, he needs a van. At an average cost of $40,000, just $5,000 less than our annual income, purchasing a fully accessible van is nearly impossible for our family.

Oscar has taught us to embrace every moment as an opportunity and view every obstacle, not as a barrier that is limiting, but as a challenge that can and will be overcome. In order to reach his full potential, Oscar needs to interact with the world independently, at a pace that enriches his bright mind. Being awarded this van will allow Oscar to be an active participant in all aspects of his life.

Thanks for all your continued support! Please check the home page regularly for blog updates on life with Oscar!