Archive for the ‘accessible van’ Category

Moving Forward: a Van

Tuesday, June 19th, 2012

On June 8th, the three winners of the National Mobility Equipment Dealers Association (NMEDA) Mobility Awareness Month van contest were announced. We want to extend our heartfelt congratulations to Alberto Cruz, the Davert Family, and Ronald Miner. Their stories are truly inspiring and really stand as strong examples of people who are triumphing in the face of disability. We hope you will take the time to view their profiles here.

We know many of you were deeply disappointed to hear that Oscar was not one of the winners of a van. We appreciate your support and your dedication so much. We’ve come back, many times, to the saying, “It takes a village to raise a child.” We are humbled, again and again by just how large and lovely Oscar’s village is. We really couldn’t do this without you.

Interestingly enough, we actually took the news pretty well that Oscar was not selected to win a van. We knew it was a real possibility that he would not. In fact, the odds were certainly against us: a national contest, over 1,700 entrants, only three vans. We knew we had to throw our hat in the ring, as they say. And I had a really good feeling. Little did I know that the good feeling would lead to, not the winning of a van, but something much larger, much more important in many ways: the raising of awareness, the growing of community.

Thanks to our friends Donna and Tom, in the last week and a half, we have had a small taste of what having a van will be like. While they are out of town, they have loaned us their van and we have borrowed a ramp again from Fonte. It’s going to be really hard to give the van back! Oscar has been out and about in his go power chair to many places around town: Family Fun Night at preschool, ice cream at the Pittsford Dairy, family swim at Mary Cariola (including a big zooming session around the completely empty parking lot), the public market, Highland Park for a picnic, Wegmans (oh my!), the pediatrician, the Brighton Farmers’ Market, and aunt Amy & uncle Peter’s house.

It was like a miracle to see our three-and-a-half year old son racing ahead of us on the path at Highland Park. With a grin on his face, he stopped when he wanted to stop, sped ahead, faster than his parents when he chose to, and he greeted strangers at his discretion. He certainly can say “hi” to folks from his stroller, but the sense of independence he has in his power chair is reflected in his decision-making power all around. It is his own prerogative to approach someone and say hello. He is simply able to be more actively involved in his own life from the seat of his power chair than from the seat of a stroller.

The long-term goal is still a fully accessible van. Although we have experienced miracles in recent days with the borrowed van and collapsible ramp, and now know this is a possible option, it is not the ideal situation. The ramp folds in four pieces and is awkward and heavy to lift in and out of the van.  A single outing requires handling the ramp eight times: 1. to set it up at home to load the chair 2. to break it down to close the van 3. to set it up at the destination to unload the chair 4. break it down to close the van—you get the idea—two more handlings to leave the destination, and two more once arriving at home. We’re happy to do it. More than happy. Giddy, in fact! Because this is the first real sense of independence Oscar has had out in the world. But, a van that is designed to be accessible will be much easier to use. And we do feel confident we will end up with an accessible van. How that will happen is yet to be seen, but it will happen.

Many of you, learning the results of the contest, have asked how you can help, or have offered up ideas of your own. We’ve heard offers of everything from being given a portable ramp and a well-loved, well-used van to starting a kickstart campaign that would involve a van and Oscar’s art work and the work of artists around the country, as well as an offer to host a garden party fundraiser or the idea of an event at the Museum of Kids Art in Rochester, to folks simply interested in making a donation. We are humbled. We are still humbled every day by the generosity that led to the purchase of our home. We can’t wrap our heads around the fact that people still want to help.

Our heads are full right now with preparations for the FSMA conference: the challenges of air travel, the excitement of Oscar being around so many other kids in power chairs, the anticipation of how our presentation will go, the chance to see familiar faces and meet so many new families who share the intimate understanding of living with SMA. We know we will have many stories to share! Perhaps upon our return, many collective creative minds can come together and the next step toward a workable solution for a van can begin to materialize.

Until then, enjoy some photos of Oscar exploring Rochester…

Ice cream with friends at Family Fun Night

Just after ice cream at the Pittsford Dairy with Minnie, a few days before her departure.

See what a pain this ramp is?!

Far ahead at HIghland Park

Holding hands with mama on the way back to the car after the park.

Playing the drums at the playground at Highland Park!

Look who’s on his own at the Brighton Farmers’ Market!

Enjoying a tart cherry icee behind the Flour City Bread table at the market.

Looking for rabbits with cousin Asher at aunt Amy & uncle Peter’s.

Van Contest Update

Thursday, April 12th, 2012

Vote for Oscar every day! Click the link HERE and use code 753 or 586 if you haven’t yet!

We are filled with gratitude and hope by the incredible outpouring of love and networking that has happened in the last week! This contest is for National Mobility Month and its primary purpose is to raise awareness about disability. Well, then, we have already been successful! And we can continue to grow that success!

Updates/things to keep in mind about the van contest:

1. Obviously the website is finicky. The contest site is receiving more traffic than was anticipated- ultimately this is a good thing. Thanks for your patience while it was down for several days and then back up and then down for a few hours and back up and down for a few more hours and…well, you get the picture.

2. New promo code!!!: 586 is an additional code (posted by Agor Enterpsies) to be used to make your single vote count for five! Just to clear up any further confusion-the promo code (753, and now 586) can be used once, only, to make your vote count for 5. The code is associated with Agor Enterprises, a local dealer right here in Rochester that is helping spread word about the contest (it is by chance that we found out from them about the contest)!

3. Voting, when and from where: it appears you can only vote once in a 24 hour period, not once a day. So, for example, if you vote at 9 pm on Tuesday night, you can’t vote again until after 9 pm on Wednesday night. (At least it appears that this is how it is working). You can also only vote from each IP address once in a 24 hour period, so if you have multiple devices/computers on the same network, you can only vote once from the whole IP address (annoying, for example, that David & I can’t both vote for Oscar in the same day-but every entrant is up against the same issue).

4. Who wins and how it happens: So, after May 13, the folks running the contest will review the essays or videos of every one who is in the top 10%. Three winners will be selected from that 10%. So, what we need to do is keep Oscar in the top 10% (he is currently hovering in the top 1-2% thanks to all of YOU)! After that we hope that his cute face will win the folks over and they’ll decide to award him a van! Winners should be announced by May 21.

5. Local Press: Yes, we’re interested! Thanks to Margaret Paige, Oscar has already been featured on #the ROC Daily on Monday.

6. Fliers to hand out: Here is a van flier you can print out and share with folks to help spread the word.

7. Poetry Reading: Oscar’s mom will be giving a poetry reading in Phelps, NY (45 minutes east of Rochester) this Sunday, April 15 at 2 pm at the Phelps Art Center (15 Church Street, Phelps, New York 14532 I will primarily be reading work related to Oscar.

8. Oscar’s current status and rank: At the moment of writing this post, Oscar had nearly 6,500 votes and ranked 12 out of over 750 entries! Pretty impressive!

We are humbled by the support and the coming together to raise awareness for SMA and people with disabilities. Van or no van, this contest is a winner!
Again, a million thanks from the Merulla-Bonn family.

Vote for Oscar! Accessible Van Contest

Thursday, April 5th, 2012

Despite a rocky start, with the site being down for 4 days, the National Mobility Awareness Month contest to win a wheelchair accessible van is up and running! PLEASE VOTE!

Every day from now until May 13 go to and vote for Oscar. The first time you vote, use code 753 and make your vote count for 5!

This is such an incredible opportunity for our family. On the one hand, I know it’s naive to think we could win a national contest. On the other hand, someone has to win it (three vans will be given away, actually) and I am really hopeful. The timing of it couldn’t be any better as we found out about the contest just days before Oscar’s “go power chair” arrived.

And just for fun…

Oscar the fish doing his nebulizer with Dada the diver.

More soon!