Hi, I am new to this so I hope I am doing this right. My friend Tina is packing up her family in 3 weeks time and heading to Disney for what hopefully will be a trip of a life time. Her son Hayden has Spinal Muscular Atrophy Type 1 Sma for short. This is a terminal disease that has robbed poor Hayden of his body, but not his mind.Most children with Sma type 1 die before their second birhday, Hayden just turned 10, so they have lots to celebrate. At the moment there is no treatment or cure. The family plan to take 5 days to travel from Ontario Canada to Disney. Hayden has to travel with lots of medical equipment and supplies and Tina has to be by his side at all times. He also has to be horizontal for a lot of the travelling, because his body cannot tolerate being in a wheelchair for more than a few hours at a time. Tina contacted special sevices and Disney and did not receive a warm reception, the man on the phone was not very helpful and didn't seem very interested in helping her. At the moment it looks like Hayden will have to share a bed with one of his parents, which is certainly not ideal. Hayden has to be hooked up to quite a lot of machinery every night, so a hospital bed would be great. Tina is longing to connect with people who have travelled to Disney with a similar circumstances to hers, so she can make this trip  wonderful and stress free. She is looking for tips on packing the van, fun things to do that are wheelchair accesible, resting places, and any other resources and info that could benefit the family. Hayden travels with a motorized wheelchair, , Hayden has no muscle control, so a standard wheelchair is not an option.Please if anyone has any ideas or thoughts they would be greatly appreciated. If you are wondering why Tina is not contacting you herself, it is because she is so busy looking after Hayden, I wanted to do something for her that would make her life a little bit easier. I found this sight last night after hearing the desperation and hesitation in her voice.  Thank you. Sma Girl.

Well as you can imagine this really struck home for me and we want to help any way that I can.  You see our little boy was named Hayden too, he passed away 2 Decembers ago.  Ok lets see what we can do here.

First is this a "wish" trip or are they coming on their own.  Where are they staying?  Are they travieling by their own car?  How long will they actually be in Florida?  In their home is he in his own room or do the parents stay with him?

Most of the handicapped rooms in the hotels off one king size bed...which is a pain.  If this is what they end up with ask for a roll away bed so one of the parents can sleep on it while the other is sharing the bed with Hayden.  If they need any medicines to be kept cold make sure they tell the front desk that it is for medical necessity and it will be free.  Also First Aid in each park offers free storage of medicine in their fridge.  Eva (my wife) made the suggestion of looking into the Family Suites at the All Star Music if they need seperate rooms.

At the Parks.  First thing you need to get is a GAC a Guest Assistance Card at any Guest Services in the park.  I cannot stress how important this is and to use it at all rides, and character meet and greets.  Just show it to the Cast Memeber at the entrance.

If while at the parks he needs a break to lie down First Aid has small "beds" you can use if need be to cool off and rest for a little while.  that way you don't have to go all the way back to the hotel.  Also I would recommend driving to the parks DO NOT RIDE THE BUSSES with his condition.

For the parks look under our tabs here at the top under SPECIAL NEEDS and then HAYDEN'S CORNER  I have written articles on all he parks on how "accessible" each ride is and where to find most of the characters.  Also they will see how accessible the restraunts are as well.  It doesn't have any frills but it should give them some good information.

If they want to get in touch with us for some advice or would like another family to meet with them who knows what they are going through while they are down here they can email us at   kyleandeva@aol.com,  or brandj13@hotmail.com  If they would like we can email them our phone number and we can talk one on one too.

Eva wants to know if she can take the info she has here with her to Give Kids the World to ask their advice as well?

We are really excited for them and want to help in any way possible.  if you have any specific questions please don't hesitate to ask.

Kyle and Eva Jones (Hayden's Mommy and Daddy)

I do think starting with the room is a great start. Make sure they have the reservations with the notations with all special needs, including the request for the refrigerator. Let's start with the room and then move on to other topics or break this post up into separate topics like down time activities and attractions. 

I know Kyle and Eva love character spots.

I would also be concerned about the increasing heat at this time of year. I worry about children sweating and needing plenty of fluids and check on sun screen and if he can wear it.

I know they have CNA's available too if they are interested in getting a little help while down there. .

Hi Eva and Kyle, may I first say how sorry I am thay you lost your son Hayden, I and I think it is wonderful the help you are offering to others in need. Eva please do share the information, all advice is very welcomed. I am seeing Tina today so I will try ang get some more information from her ie where they are staying. I know for sure they are staying on sight.

Hello SMA girl, welcome to Mouse Aid!

There are so many questions to ask in order to help you get them the information they need for this trip! You are a great friend to be taking some of the burden off of their planning.

You mention that Hayden has to rest at school a lot and has to be horozontal. Is his wheelchair able to recline, or does he transfer to a bed? This information will help us put together some things to do when he is able and other things when he is down.

Which resort will they be staying in? To be honest I do not know of any resort that offers a King bed and a double. This concerns me because I hope someone at Disney did not mislead them. I do know that Port Orleans Riverside has 2 doubles and a pullout trundle bed. That would give Hayden his own bed. If you are worried about him falling out of the bed, bed rails are inexpensive and can be found at Walmart or Target.

I have checked into a couple of places that have hospital beds and it seems that they can not deliver to Disney. I don't know why... I wish Disney was more helpful with this. The sad thing is that part of the reason we have this site is to help those that do not get what they need from Disney.

Okay, so once we know where they are staying and if the chair reclines or if he will have to go to the room to rest we will be happy to help put together a plan of action. We can help put together rides and shows that are accessible in an order that he can rest between.

I am also waiting  to hear back from a friend that may know someone with SMA. That would help trememdously!!

I put my two cents in

Hi, yes I got the info wrong about the king bed and double, they are actually getting a king and a pull out.Hayden has to transfer to a bed when he rests, or at least a flat comfortable surface. At home he uses a massage table, but because of it's size it will not be going with them on the trip. Hayden's chair does not recline, As for falling out of bed, that is not a concern because Hayden can't move by himself. The family is staying at Disney's Boardwalk Inn, and they can't wait!!

I want to thank you all so much for wanting to help Hayden and his family out, they deserve this family vacation so much.!! and a special thank you to Beth for being so helpful with all my computer probs!!

Hayden is a trooper, we went to the Toronto Zoo a few weeks ago, and he wanted to keep on going when the rest of us were done in, but in reality I think every 2-3 hours to keep him strong. Hayden may even have to take a day off completely here and there, his rest is so important to his health!!

Hayden doesn't nap he just rests.As for Lauren if she wants to ride T ina will make it happen and Hayden will be there egging her on. This family is used to compromise!!

I agree with Pogo in saying that WDW is such a magical place and have such a way of making everyone, but especially children with special needs feel right at home.

Boardwalk is a wonderful resort, it's so nice to be close to a lot of restaurants and shopping, plus it's very close to Epcot.

I wouldn't hesitate to let any cast member know if there is anything they need, I know that they'll do anything in their power to help.

I hope that they have the most magical trip, Hayden sounds like a wonderful boy!