advice would be greatly appreciated...as with any aspect of duchenne, we were not truely prepared for this next step of austin(age 10) using a full power chair. he actually can walk some, but the scooter he has used for yeras was not supporting him, and we wanted him to be more comfortable as he really doesnt walk much at school, so, the chair is here, the issue is, we have no way to transport it. we had thought this would be easy, go to local dealership ( my husband happens to be friends with the owner) and order van... however, it is not so simple. we have two sons with dmd, austin is the oldest, max, 7, shows no symptoms but we want to buy a van to accomidate two chairs anyway. we also have 3 younger kids,plus a newfoundland who hates being alone! and we often travel with caregivers. in case you lost count thats 3 kids, two adults, two kids in chairs a big dog ( and a partridge in a pear tree?!!) we want something big, extended van with 2 chair tie downs plus two rows of bench seats i think. we assume we need a raised roof ( but i guess im not sure) has anyone had any experience finding a van of this size (not a bus, as my husband cheerfully suggests). and the other question is price, it seems a small van with ramp or lift can be bought for 20-30 thousand, but as soon as you get bigger it turns into a second morgage. thanks for any help! feeling stuck at home!

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Comment by jenn on December 8, 2009 at 12:03pm
thanks samantha, do you like easy lock? the only possible issue we have heard is that if the wheels on the chair have snow or mud on them they wont lock in, i like the idea of him being able to just drive into place. we are feeling pressure to get the van soon, with the possibility of the exon skipping trail in march we may nee to rive to ohio, we may just find a used van that seats austin, max and the baby, the other 2 are my step-kids, and we dont have them full time except in the summer...we have seen used ramp vans for under 10,000...
Comment by Samantha Dearing on December 8, 2009 at 10:51am
Justin has an adult sized powerchair. The ramp is an automatic ramp that comes down. Justin and the chair combined weigh close to 350lbs i think. We dont use tie downs. We had the EZlock system installed where Justin drives right into the van and it locks his chair into place. Before we had that we had tiedowns and they were a pain, but didnt take up much space. There was a strip running along the floor where the tiedowns were secured. We got our van from FMI...Freedom Motors Inc.
Comment by jenn on December 4, 2009 at 12:30pm
samantha, does your son have a large power chair? what type of ramp is it? we were told by ride away that we needed a two bar lift, that ramps dont always carry a heavy chair... how much space is required for the tie downs? thanks, sorry so many questions, we want to get it right the first time!
Comment by Samantha Dearing on December 4, 2009 at 9:15am
Our van has two captains chairs, two seats behind them and then Justins chair sits in the middle of those two seats in the middle of the van. If we only have him, then there is a folding bench seat in the back. Our ramp is in the back of the van and takes up very little space. We have a lowered floor, but not a raised roof.

Jacobs mommom--Justin stopped walking when he was about that age. He was already having trouble getting around and couldnt get up off the floor at all. Then he started asking to use his chair at school, and just one day he was using it at home and that was it. It was about a year long transition for us.
Comment by jenn on December 3, 2009 at 8:03pm
to everyone, thanks for the comments, we have spoken with ride away, they did some research and found the dodge sprinter, easy to make accessible, already large, with 4 rows of seats and raised roof, also comes with high door, less modifications, they tell me they can remove 2 rows and leave six seats in back... we will begin searching, but they are not cheap, even used. we are going to keep researching, i will try the rollx website as well, thanks! p.s yes the school has to bus the boys, but they are the only ones that ride the short bus in their school, and it is the only bus in the district, so as it stands, they either get picked up from school at 3:45 (school gets out at 3) or 2:20 i want to be able to do it on my own!
Comment by Jennifer Shumsky on December 3, 2009 at 5:37pm
Hi Jenn,
I don't know if you would be interested, but we live about 10 miles from the Rollx dealership and so we have had the opportunity to be exposed to the Rollx company quite a bit. They are good people, the company was started by a family that was affected by disability and could not find a vehicle to meet their needs. They participate in many of our local MDA events and they do ship vehicles nationwide. They can at least let you know what is out there and what options you have. Their website is www.rollxvans.com and you can give them a call to discuss your needs, no obligation and they would most likely at least give you some ideas. Good luck!
Comment by cheryl cliff on December 3, 2009 at 2:16pm
Hi Jenn,

Our van is a toyota/sienna/xle. Not raised roof, lift comes out the back at the hatch and a side lift/chair for Alexander to get in easier. The lift took up ALL extra space in this minivan. There is no back bench seat, just 4 captain seats for driver and 3 passengers, one seat has the lift option mentioned previously. We did save the extra seating that was pulled out for lift install. The van could be converted back to just a standard minivan if lifts get pulled out and we want to sell it. We made sure to select our scooter before the lift to make sure dimensions would work, and supplied those dimensions to the "conversion specialist" (aka highway robber). We wanted a simple ramp installed but toyota financing wouldn't allow that, they instead insisted on the 2 lifts which are considered "american standards" for accessible vehicles. The lifts do work well, just take up a lota room.

Donna-Alexander has roughly the same deletion as Alexander. Alexander (11) is still walking, just not very steady or long &he does the "running" thing. We obtained our first scooter free from MDA loaner closet...and they confirmed he can have it forever. MDA also puchased a new one, the loaner kept breaking down so now it's our "spare". Not advocating MDA here - I actually don't approve of their fundraising in behalf of my son while not doing anything for researchers. Just having the scooter for Alex to play with in the driveway helped a lot, he decided when he felt the need to use it, which I think helps give some control back. Don't know if any of this will help with Jacob - xox
Comment by Mortman on December 3, 2009 at 12:56pm
Hi Jenn,
We had the same issue 6 years ago, but not quite to the same extent. We have 2 chairs, but only 1 additional child without DMD.
We have the largest passenger vehicle that you could buy at the time. GMC Savanah, extended, designed to hold 14. We had the lift installed at the back of the van and the topped raised. We were able to get state funding (NY) for the lift and the raised roof. Three rows of bench seats were removed, leaving one left up front. We were told the chairs cannot go side-by-side as there is not enough room for the tie-downs. That left only room for 1 bench.
I believe this would work for you. Your three would sit on the bench up front and the two boys in the back with your horse (sorry, I mean dog :) )
The vehicle is huge and is like driving a bus. It gets around 14 mpg on the highway and 10-11 around town with everyone in it. Without the chairs inside, it is very light in the back and is like a big sail in windy conditions. I highly recommend good snow tires in the back during the winter!
It was pretty expensive...Van was $35, lift $5 and the top and tiedowns $6.
My wife hated getting rid of the minivan for this monster, but it really has been great to travel in.

On a side note, it is the school's responsibility to get your sons (and chairs) back and forth to school...right?
Using the chairs full time came as a relief to the boys at the end. It is much harder on us than them I think.

Email me back if you have additional questions.
Ed
Comment by jenn on December 3, 2009 at 11:42am
cheryl and samantha, going from sports car to suv to chevy express van was a really hard transition for me... for now the 6 people one chair and one dog would work, does the van have a ramp or lift and what kind?does it have a raised roof or lowered floor? what is the seat configuration? we are worried that if we try to adapt our van austins chair will hit the roof.... thanks jaconb mommom, austin can still walk, but falls alot and it is very hard for him to get up, we prefer he stay in his chair at school to minimize fall rsk, also he has heel contracture so he teeters around. he gets tired too, he will be eleven next week, i would say it really doesnt happen over night, my husband and i were remembering the summer austin was 9, he could still hike in our woods. i used to get mad when he would be gone so long, i now wish he could still walk to the neighbors. when it is time for a chair, it will be obvious to you and him. take care, thanks and keep the advice coming!
Comment by Jacobs Mommom on December 3, 2009 at 10:22am
Hi Jenn: Unfortunately I can't help you but I do have a question you might be able to answer. How fast does the non-ambulatory part sneak up on you? Jacob is 9 1/2 and seems to be doing well. Still walking and running sometimes but I keep looking at him and wondering how will we know when it's time?

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