Looking for a good mobility device for my daughter...

[HappyDisneyWife]

Good day all! If you’ve seen me post on the disABILITIES board before, you know that I have a Fold & Go MagSHOCK motorized chair for myself & I absolutely love it!! However, I’m looking for my 10-yr old daughter and need a little help... She is tiny and super fragile.

She has an extremely rare genetic disease which has no cure. It’s called EB, and she’s got the worst form (Recessive Dystrophic Epidermolysis Bullosa)... I want to give a little background so that you understand what I’m up against as I look for a good mobility device for her (she has just outgrown her stroller).

Basically, kiddos with RDEB require to be pushed or to use a motorized device (risking injury to her hands is not an option- and many kids’ hands are “gloved” making self-propelling a huge challenge). She wears bandages from neck to toe. Having substantial shocks and padding is crucial or she will get blisters and open wounds from the chair & its movements. Many kids her age require a wheelchair full time, so we are thankful that she only needs something for big excursions (although that can change at anytime as her disease is progressive).

I want something that is light and able to travel well... but that ticks all the necessary boxes for her needs. I’m just not ready to commit to something motorized for her (yet). I’ve been very intrigued by the “off-road” manual chairs which use levers to propel (and they tend to have great shocks and padding, as well). I really like the idea that it would help her be more independent and give her good exercise. I’m ok with getting a bigger stroller style, but am concerned about the lack of shocks (her last one was the biggest jogging stroller we could buy and it did pretty good). A canopy really is good/necessary for her too as the sun makes her overheat & takes her fragility up several notches.

So, that’s my challenge. Our next trip will hopefully be this coming spring & I’d like to have something figured out before then. Oh- and since I am already packing a Fold & Go for myself, it can’t be huge

 

[mamabunny]

Dang... If she didn't need the shock-absorbing capability, I would ordinarily suggest a Travelscoot; they have a "grow up" program that starts the child on their smallest size unit, and then you swap up the parts as the child grows to keep up with their size. I have put what has to be thousands of miles on mine now, and love them because they only weigh 35 pounds (with the battery), can fold down to the size of a golf-bag for travel if needed, and are very well made. They do offer a "shock absorber" post for the seat, but I have no actual experience with that, since it's an upgrade they came out with after I bought my last one, several years ago.

It has solid rubber tires (so no worries about flat tires) but it would be the seat post as the primary shock absorber, other than what the rubber tires and the seat cushioning provide. You can always reach out them, and ask Tony if they have any mods they could do that would work for her; I would definitely want to add a CrampBuster to it, just to help her hands. I also know that folks have taken the factory-supplied seat base to auto upholstery shops, and had them completely redone with memory foam, or gel cushion, or whatever was best for them. I personally refitted my seat bracket with a boat seat base that is far more comfortable for me, so I know there are "modifications" that can be made to it.

I have attached a SportBrella to my Traveslcoot in the past; It works, but like most "coverings" for wheelchairs/ECVs/strollers, it's only really totally effective if the sun is directly overhead, or you are facing away from the sun. Otherwise, some sun will usually get underneath (although I guess that happens with the strollers too?). I personally would rather wear a hat with a nice brim; the SportBrella just got in the way - a lot - and 'bout drove me crazier than I already am! I always felt like it was blocking some of my peripheral vision, and at Disney, I like to be able to see *everything*!

There are tons of folding scooters out there now - and she might really enjoy being "in charge" of her own mobility at places like Disney (you could always put a Tile tracker, or some other device on it so you could keep track of her and the device - or Find My Friends/similar if you have an old smartphone she could carry). Our daughter was a Shriner's kid, and because of her condition, by age 10 I was letting her run her own Tilite chair pretty much everywhere. If your daughter has a similar disposition (she sees mobility devices as tools, not toys) she might be fine using anything, powered or not, that could be sized correctly, and offer enough shock absorbing capability. Would she be able to self-propel?

Everything I find for a smaller person that folds compactly doesn't really have shock absorbers (although some of them do look pretty comfy, I would guess you just can't risk it with her condition) and anything I see that looks like it has any amount of actual suspension doesn't look like it folds down any smaller than our F&Gs. This is a bit of a head-scratcher.

What about something like this? The Mighty Lite has a transit option - so it can be tied down on Disney's buses (and other transportation) if you get it equipped with that option. It's still a stroller, but it goes to 150 pounds, so she could use it for a while... but would require a pusher person.

Or, is it possible she could use a standard pediatric folding chair for now, but with a high-quality cushion?

I can see your conundrum - it sure feels like there should be an option out there for her somewhere - we just have to find it!

 

[Grateful Mickey]

Golden Technologies!!

 

[HappyDisneyWife]

Dang... If she didn't need the shock-absorbing capability, I would ordinarily suggest a Travelscoot; they have a "grow up" program that starts the child on their smallest size unit, and then you swap up the parts as the child grows to keep up with their size. I have put what has to be thousands of miles on mine now, and love them because they only weigh 35 pounds (with the battery), can fold down to the size of a golf-bag for travel if needed, and are very well made. They do offer a "shock absorber" post for the seat, but I have no actual experience with that, since it's an upgrade they came out with after I bought my last one, several years ago.

It has solid rubber tires (so no worries about flat tires) but it would be the seat post as the primary shock absorber, other than what the rubber tires and the seat cushioning provide. You can always reach out them, and ask Tony if they have any mods they could do that would work for her; I would definitely want to add a CrampBuster to it, just to help her hands. I also know that folks have taken the factory-supplied seat base to auto upholstery shops, and had them completely redone with memory foam, or gel cushion, or whatever was best for them. I personally refitted my seat bracket with a boat seat base that is far more comfortable for me, so I know there are "modifications" that can be made to it.

I have attached a SportBrella to my Traveslcoot in the past; It works, but like most "coverings" for wheelchairs/ECVs/strollers, it's only really totally effective if the sun is directly overhead, or you are facing away from the sun. Otherwise, some sun will usually get underneath (although I guess that happens with the strollers too?). I personally would rather wear a hat with a nice brim; the SportBrella just got in the way - a lot - and 'bout drove me crazier than I already am! I always felt like it was blocking some of my peripheral vision, and at Disney, I like to be able to see *everything*!

There are tons of folding scooters out there now - and she might really enjoy being "in charge" of her own mobility at places like Disney (you could always put a Tile tracker, or some other device on it so you could keep track of her and the device - or Find My Friends/similar if you have an old smartphone she could carry). Our daughter was a Shriner's kid, and because of her condition, by age 10 I was letting her run her own Tilite chair pretty much everywhere. If your daughter has a similar disposition (she sees mobility devices as tools, not toys) she might be fine using anything, powered or not, that could be sized correctly, and offer enough shock absorbing capability. Would she be able to self-propel?

Everything I find for a smaller person that folds compactly doesn't really have shock absorbers (although some of them do look pretty comfy, I would guess you just can't risk it with her condition) and anything I see that looks like it has any amount of actual suspension doesn't look like it folds down any smaller than our F&Gs. This is a bit of a head-scratcher.

What about something like this? The Mighty Lite has a transit option - so it can be tied down on Disney's buses (and other transportation) if you get it equipped with that option. It's still a stroller, but it goes to 150 pounds, so she could use it for a while... but would require a pusher person.

Or, is it possible she could use a standard pediatric folding chair for now, but with a high-quality cushion?

I can see your conundrum - it sure feels like there should be an option out there for her somewhere - we just have to find it!

Thank you so much for your thoughtful reply! I know I gave a pretty near impossible request.

I had seen Travelscoot when I was looking for myself, and never considered it for my DD. It does seem like if I could modify the seat & seat back, plus add some shocks- there would be a real possibility there! My husband might be afraid to let her drive it though (since one accident/spill would be... catastrophic). & I’m not 100% sure how she would be with it... tool or toy? I think she’d probably be super careful until she felt confident. Then all bets might be off!

The Mighty Lite is a good stroller option ... there are quite a few I’m considering in that category, and I really like that many offer the bus tie-down option ... I just wish there was one with off-roading wheels (& the accompanying shocks ).

I just really don’t know which would be better- a larger stroller or a smaller wheelchair?? We have plenty of experience with strollers, but I know nothing about pediatric wheelchairs (apart from people we’ve met & things I’ve read). It’s a tough call. So, on the one hand I’d like to try before we buy... which leans me towards renting something for this trip. But if we don’t have it specifically geared for her, then it could cost a lot of pain and heartache if it hurts her.

It really helps me to process decisions like this “out loud” and bounce ideas off of people who’ve been there. So, thank you again!!

 

[HappyDisneyWife]

Golden Technologies!!

Those look a little too grown-up for my bitty 10-yr-old. I think they would swallow her whole

 

[SueM in MN]

I’m going to move this to the disABILITIES COMMUNITY Board since it’s not WDW related.

 

[HappyDisneyWife]

I’m going to move this to the disABILITIES COMMUNITY Board since it’s not WDW related.

I can understand the move, but the reason I posted it in the WDW portion was bc that’s where she needs it- inc. all of its heat and bumpy theming challenges. She doesn’t need it for home- she needs it for Disney

 

[MS_Warrior]

Good day all! If you’ve seen me post on the disABILITIES board before, you know that I have a Fold & Go MagSHOCK motorized chair for myself & I absolutely love it!! However, I’m looking for my 10-yr old daughter and need a little help... She is tiny and super fragile.

She has an extremely rare genetic disease which has no cure. It’s called EB, and she’s got the worst form (Recessive Dystrophic Epidermolysis Bullosa)... I want to give a little background so that you understand what I’m up against as I look for a good mobility device for her (she has just outgrown her stroller).

Basically, kiddos with RDEB require to be pushed or to use a motorized device (risking injury to her hands is not an option- and many kids’ hands are “gloved” making self-propelling a huge challenge). She wears bandages from neck to toe. Having substantial shocks and padding is crucial or she will get blisters and open wounds from the chair & its movements. Many kids her age require a wheelchair full time, so we are thankful that she only needs something for big excursions (although that can change at anytime as her disease is progressive).

I want something that is light and able to travel well... but that ticks all the necessary boxes for her needs. I’m just not ready to commit to something motorized for her (yet). I’ve been very intrigued by the “off-road” manual chairs which use levers to propel (and they tend to have great shocks and padding, as well). I really like the idea that it would help her be more independent and give her good exercise. I’m ok with getting a bigger stroller style, but am concerned about the lack of shocks (her last one was the biggest jogging stroller we could buy and it did pretty good). A canopy really is good/necessary for her too as the sun makes her overheat & takes her fragility up several notches.

So, that’s my challenge. Our next trip will hopefully be this coming spring & I’d like to have something figured out before then. Oh- and since I am already packing a Fold & Go for myself, it can’t be huge

I would suggest getting with a physical or occupational therapist. They can recommend a wheelchair company that will measure her and work with you to get the best wheelchair for her. If you get her a manual wheelchair, when you’re ready for a motorized, permobil makes an attachment that is operated with a smart watch. If you have an Abilities expo any where near you, I would also highly recommend that. You can try all sorts of chairs at those.

 

[HappyDisneyWife]

I would suggest getting with a physical or occupational therapist. They can recommend a wheelchair company that will measure her and work with you to get the best wheelchair for her. If you get her a manual wheelchair, when you’re ready for a motorized, permobil makes an attachment that is operated with a smart watch. If you have an Abilities expo any where near you, I would also highly recommend that. You can try all sorts of chairs at those.

Thank you for your thoughts! Her (specialty) doctor is definitely working with us since she understands all the ins/outs of this disease.

& The abilities expo is a fantastic idea!! I’m already starting to look into how we can get ourselves to one this year. Thanks for the great suggestion!

 

[SueM in MN]

Thank you for your thoughts! Her (specialty) doctor is definitely working with us since she understands all the ins/outs of this disease.

& The abilities expo is a fantastic idea!! I’m already starting to look into how we can get ourselves to one this year. Thanks for the great suggestion!

If there is not an Abilities Expo near you, check if they have a virtual option. I attended virtually several times when they were not doing in person due to COVID.
Obviously, not the same as actually seeing and touching equipment, but they had video presentations, some virtual meetings/forums and ability to messsge company representatives and also other virtual attendees.
I don’t know if they still are doing virtual now along with in person, but they have not any closer than 5 hours drive from my location in about 10 years - and I live close to a major metro area, not somewhere remote.

 

[HappyDisneyWife]

If there is not an Abilities Expo near you, check if they have a virtual option. I attended virtually several times when they were not doing in person due to COVID.
Obviously, not the same as actually seeing and touching equipment, but they had video presentations, some virtual meetings/forums and ability to messsge company representatives and also other virtual attendees.
I don’t know if they still are doing virtual now along with in person, but they have not any closer than 5 hours drive from my location in about 10 years - and I live close to a major metro area, not somewhere remote.

It looks like there is going to be one in Chicago this year, which isn’t crazy far for us. I’m pretty excited, bc being able to actually touch the different equipment is a big deal to me.

 

[MS_Warrior]

Thank you for your thoughts! Her (specialty) doctor is definitely working with us since she understands all the ins/outs of this disease.

& The abilities expo is a fantastic idea!! I’m already starting to look into how we can get ourselves to one this year. Thanks for the great suggestion!

You're welcome!

 

[MS_Warrior]

Thank you for your thoughts! Her (specialty) doctor is definitely working with us since she understands all the ins/outs of this disease.

& The abilities expo is a fantastic idea!! I’m already starting to look into how we can get ourselves to one this year. Thanks for the great suggestion!

You're welcome!

It looks like there is going to be one in Chicago this year, which isn’t crazy far for us. I’m pretty excited, bc being able to actually touch the different equipment is a big deal to me.

I'm glad there is one you can attend. Actually sitting in them and using them make a huge difference. Be sure to check out permobile