Muscular Dystrophy

[teglazer]

Hi all,

My Son Charlie is 6 and he has muscular dystrophy, He has a hard time with steps and standing for long periods of time. He is such a trooper in spite of his condtion. We are new to disney and wondering if anyone has any information that would make our trip wonderful without Charlie being miserable. Not sure if he will make it standing in lines all day, very nervous I spent a ton of money and he will be in pain all day. Any little secrets and tpis would be great. Thank you

 

[chaospearl]

Hi Tara

Don't worry -- Disney is very responsive to the needs of disAbled guests. You can get something called a Guest Assistance Card or GAC that will help your son do Disney without pain. It's not a front of the line pass, but it will address any particular needs that he has. If he can't stand in lines, a good option is for you or your husband to get in the queue and have the other one sit with Charlie in a quiet, shaded spot without too many people -- the GAC will ensure that you're escorted to such a place (if there is one available for that ride). Then when the person waiting in the line gets to the front, your son and spouse can join and go on the ride without having to actually stand in the line. A GAC can also alert Disney to the fact that your son can't climb stairs, and whenever possible you'll be able to go into the ride via an alternate entrance.

Like I said, the GAC won't let you go to the front or cut down on how long you have to wait -- what it WILL do is ensure that you're able to wait your turn without Charlie having to stand up in the hot sun, walk through a long queue, or climb any stairs.

Disney does involve a LOT of walking. Is your son small enough that he could use a stroller? If not, maybe a child's wheelchair would be appropriate? Standing in lines isn't the only thing he's going to have difficulty with, so your best bet is to find some way to help him get around the park without walking the whole way.

Jenni

 

[teglazer]

We actually just ordered a stroller type weheelchair for him for disney. So he won't have to walk all over the park. Thankyou for the information. I really appreiciate it

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #6 about the Guerst Assistance Card and Stroller as Wheelchair might be most useful to you.
Or, if you want an easier route, click on the link in my signature.

 

[bouncycat]

to you, teglazer!! I know kinda what you're going thru!! I have a rare type of Muscular Dystrophy called FSH, and even tho I'm ambulatory, I still go to the world in much pain! I pop pills all day! But, it doesn't stop me from going. The GAC card is great, also if he has a stroller that he can use for a wheelchair, that'll help him too. My friend across the street from us has a son with Duchennes, and it breaks my heart to see what all he's going thru. He just turned 17, and they didn't expect him to live past 14. Even tho he goes thru good times and bad, that doesn't make it any easier. MD is a HORRIBLE disease, even tho mine is more uncomfortable, and not disabling, it's still rough on my DH, cause there are things I just CAN'T do, and I do try...I really do! But, keep plugging, and loving him, and giving him the best possible life dispite his disabilty! BIG BIG to you!!!

 

[maroo]

Hi all,

My Son Charlie is 6 and he has muscular dystrophy, He has a hard time with steps and standing for long periods of time. He is such a trooper in spite of his condtion. We are new to disney and wondering if anyone has any information that would make our trip wonderful without Charlie being miserable. Not sure if he will make it standing in lines all day, very nervous I spent a ton of money and he will be in pain all day. Any little secrets and tpis would be great. Thank you

Have you guys applied for Make a Wish or similar organization?

I know you are going to Disney...and you don't have to wish for Disney (although it is a WONDERFUL trip that offers more than you can ever do on your own at Disney)...but he can wish for anything.

We started researching for a trip and found out Lauren qualified...we didn't take the first trip - we waited till after she met with the wish people...Lauren decided she wanted to go to Disney so she could experience Give Kids the World AND Disney.

Just a thought for you guys!!

Any child with MD would qualify since MAW is no longer for terminal children...more for children with life threatening illnesses.

Welcome to the forum!!

 

[mechurchlady]

The stroller is not counted as onboard luggage when you fly.

Get the "Stroller as a Wheelchair" thingy so that CMs will know that you are entitled to take the stroller/pushchair anywhere that wheelchairs go even if the signs say "no strollers allowed". You will be able to go where wheelchairs go so you can take the kid through the lines except for a few very old rides.

Buses
If your chair is rated for public transportation then you can take it on the buses and monorail without removing the child just like a wheelchair. It will say in the manual if the stroller is up to that regulation. If it does not say so then you will have to fold the stroller if you can on buses and monorails.