Daughter with MD...general questions

[SatninDis]

Both myself and DH are Disney World veterans...going every year, sometimes 2 or 3 times a year since we were kids..up until our daughter was born. She's now 4 years old and has Muscular Dystrophy and wants to go to Disney World! I thought I knew everything about Disney but now I'm feeling overwhelmed even thinking about planning a trip with her.

Gia is severely hypotonic but does have use of her arms. We describe holding her like holding jello. We figured if we are going to take her, now is the best time. Her condition will only progress we are told.

We of course want to make this trip magical for her and I always read about the Bibbidi Bobbidi Boutique. I know she would LOVE this because she already thinks shes a princess! Does anyone know if they have restrictions for a child with special needs like hers? She would be able to sit in the chair if me or her dad were allowed to hold her head.

Are there any rides at all that we shouldnt even mention to her? I know that most if not all of the rides are handicap accessible but the one thing me and DH have been talking about every night for 3 weeks are other peoples reactions to having to wait for us. We had a very bad experience on our one and only airplane trip with her to the Mayo Clinic last year.

I think we would be interested in doing a dining plan so we really could have almost everything prepaid so we wouldnt have to carry a lot of cash. But I read that everyone in the party has to have it. Gia has a G tube. I wonder if we were to prepay for her and then at check in maybe be refunded for just her? Or is it just better to not go with a dining plan?

I will eventually call Disney with my questions but I want to have some kind of idea of what I'm talking about before I do.

Are there any little special things that maybe we can do with her besides BBB? Any little tricks or tips that other parents can give us?

I appreciate anything to make this anxiety go away! Planning a trip should be fun!!!

 

[kellyw8863]

Have you tried contacting Make-A-Wish? I would think with MD that she would certainly qualify. My four year old has mitochondrial disease, which falls under the umbrella of MD, and we just returned from our trip a couple of weeks ago. It was an amazing, amazing week. Just a thought!

 

[SueM in MN]

I second the Make a Wish idea. You may want to check out the Wish Trippers Unite thread near the top of this board. Many of the people posting and/or reading that thread will have dealt with some of the same things you are facing about a WDW trip.

I have some general suggestions and some questions:

Suggestion 1) Check into the disABILITIES FAQs thread near the top of this board or you can follow the link in my signature to get there. Post #6 has information about Guest Assistance Cards (GACs).

Suggestion 2) Post #11 of the disABILITIES FAQs thread has a list of attractions for each park where a guest can stay in a wheelchair for the entire attraction.

Suggestion 3) Post 15 of that thread is about air travel, which may be helpful for you in contemplating a trip. Ask to preboard, which will help you to get settled before other passengers are getting on.

Now, some questions:
1) Does she have a wheelchair or a special needs stroller. If a special needs stroller, what kind is it and does it have a transport option (for tiedowns on buses)?

2) Can she sit beside you fairly securely for rides?

3) How is her head control (I noticed you mentioned holding her head up for Bibbidi Bobbidi Boutique)?

4) Would you be able to lift her into ride cars and sit next to her?

5) Is she able to tolerate some movement of the ride car, or does she really need very gentle motion?

6) Besides Princesses, what other things is she interested in or not interested at all in?

BBB would not be a problem - there are quite a few Make a Wish kids who have gone there.
One other thing that she would enjoy is the Princess Meal at Akershus in Norway at Epcot. When you enter the building, you get a chance for photos with a princess, then as you eat, other princesses come by your table to visit.
There is also a princess meal at Cinderella's Royal Table in MK. We did that a long time ago, but prefer the one in Norway. It's also easier to get reservations.

THis is a link to a recent thread about G tube feedings and WDW restaurants.

This recent thread may be helpful to you too.

After getting your answers, you will probably get some good advice.
If you have any specific attractions that you are interested, just mention them and we will try to answer.