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jersey1123

Camping w/Cystic Fibrosis

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Good Morning!

 

I have WDW loving kids and camping may be a less expensive way to enjoy our favorite place.  However, 2 of my children have cystic fibrosis.  We would require electricity to do their twice daily breathing treatments and vest treatments.  I think we can manage to sterilize neb cups by boiling water on a camp stove.  I am really curious about details of tent camping at Fort Wilderness.  There is really minimal info about it on the Disney website.  Can someone fill me in on specifics?  

 

Do you bring your own tent and supplies OR is the tent supplied?

 

I have noticed sites that say "premium hook ups" do all sites have electricity?

 

How far are the "comfort stations" on average?  Is it a short walk or a drive?

 

How "secure" are the campsites?  Do you pack your belongings up every day?

 

I think this could be a lot of fun - but with kids with chronic illness I have to have as much info as possible.

 

Have any of you camped with kids or adults with Cystic Fibrosis?  How did it go?

 

Thanks!

 

 

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Welcome.  We have tent camped there a good bit.  Disney does have tents they rent but we have our own.  As for security, we all hope for the best, but know there can be unsavory people anywhere.  We make sure we never leave purses or phones unattended.  Computers and our panini we would lock up in vehicles.  We have not had any clothes, towels, coolers, or chairs bothered by anyone.  (I heard about some swimsuits being taken off a clothesline once, so, yes, it could happen.)  Now, food, yes - if you don't really secure your cinnamon rolls the squirrels will get them.  Lesson learned.  They CAN eat through plastic.  

 

Welcome to the insanity!

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Depending on when you camp the weather could be brutal/wet for tent campers. Also WDW is known as the croup capital of the world. I have friends who's children have lung issues and always end up in the ER. If you come prepared for possible side effects from a picked up illness you should be good. When you make your reservations make sure they understand your medical needs and place you close to a comfort station if need be. The Fort is pretty posh all the way around. You will be hard pressed to find a nicer campground.

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Welcome to the group.   You will love it here.   We have three children in wheel chairs (19, almost 18 and almost 3).  Two of them sometimes require oxygen, breathing treatments, suctioning  and are fed through g tubes in their stomachs.  One also breathes through a trach.  We travel and stay in our RV and we have it set up with all the equipment if it is needed.

 

IT would depend on how long you are staying as to whether or not the battery would last for the nebulizers.  Good luck and we hope you and your children enjoy Disney World as much as we do.  We are there every December-January.  We love it and so do our children.  :welcome2:    :welcome2:     :welcome2:

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Kristie,  No, unfortunately our kids have to be back in school Jan. 5th.. We will have already kept them out a couple weeks prior to Christmas.  We plan to get there around Dec 9th and out by Jan 3rd.

 

Jersey,  As mentioned above all sites have electricity, water, and cable connections.  Tent sites do not have sewer connections.  I'm sure you know better than I how different weather could affect your kids, so plan accordingly if necessary.  If you bring a small TV, you will need to provide the cable to the post.  You will also likely need extension cords with multiple outlets to power your in-tent equipment.  Fans/ heaters/air-conditioners as appropriate.  I know you will have 2- 15/20 amp outlets and (someone will correct me if I'm wrong) a 30 amp outlet to which you could plug in an adapter to a "standard" power cord.

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I know a couple with a child who has CF.  So, I know it can be quite a challenge.  I know that they travel with him, but I don't think they're ever tent camped with him.

 

One possible misconception that I see in the original post is that tent camping at the Fort is a less expensive way to visit WDW.  This is something that has been discussed here before, and it is not necessarily true- especially if you don't already own all of your own camping equipment, or have a way to borrow it.  By the time you buy or rent what you need, that inexpensive campsite is going to cost more than a discounted value resort room, and a lot more than a nice off-site room.

 

But, discussions about price will inevitably lead to discussions about value.  A popular opinion held by many here, including me, is that even though it can be more expensive, the Fort Wilderness experience is far superior to a value resort experience.  For me, there is no other WDW resort I'd rather stay at, for any price.

 

With proper planning, you could have a great visit, and all your children's needs can be accommodated.  I wish you the best, whatever you decide to do.

 

And welcome to the Fiend Family!

 

TCD

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Another thought to consider is renting a pop-up or a travel trailer. There are local companies that do this some of which are sponsors of this site that can be found via the "Info" tab above. With a popup or trailer you will have heat and A/C as needed and will be off the ground is the event you have rain during your visit.

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Another thought to consider is renting a pop-up or a travel trailer. There are local companies that do this some of which are sponsors of this site that can be found via the "Info" tab above. With a popup or trailer you will have heat and A/C as needed and will be off the ground is the event you have rain during your visit.

 

It's a great idea, but there goes the "less expensive way to enjoy our favorite place" concept.

 

A value room would almost certainly be cheaper.

 

TCD

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H there!

 

I'm brand new to this site but have been lurking for a long time.  This thread is so timely as I have similar questions.

 

We have CF in our family as well and have been thinking about camping for a very long time.  We are planning to rent a big RV and have it parked at the Fort next November.

 

My main concern is the smoke.  I know many people use those campfire/heater things and I think I read that they are allowed at the Fort.  I've also heard that smoking is allowed at the individual sites.

 

I just worry that those things might exasperate a serious lung disease. 

 

I never thought about the power thing to ensure we can still do the vest.  Def must look into that.

 

Does anyone have any insight on the smoke issue from fire pits or neighbors who may smoke?  Are there any smoke-free loops?  We will likely rent a large (40 foot) RV and will need a premium site...does anyone have any recommendations?  We have three littles (9,7,3) and will hopefully get a golf cart, but I'd like to be close to the center activity if possible.

 

Thanks OP for starting this conversation.

 

Happy planning everyone and thanks for all the wonderful advice on this forum.

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Welcome to all.

 

We pop up/tent camp and it can be challenging during rainy weather, but still a great experience.

 

You can do a search for some of my trip reports to see out set ups.

 

Now trying to answer some questions and I hope I get them fairly correct.

 

There are no smoke free/sites or loops.  Usually the smells aren't too strong from campfires.  A lot of people don't bother with them since there is a large communal one every night with a movie, and for  most of the year it's too darn hot in FL to sit around a fire.  But that being said, your neighbors may be real campers and have a firepit set up right next to you, it's the luck of the draw.  The site next to us for Halloween weekend had 2 or 3 cigar smokers, and at times we got a good strong whiff of smoke.

 

All sites have power, but like any place, there can be a power failure, so plan accordingly.

 

All the comfort stations are within walking distance, and even from the furthest site its only a couple minute walk.  But like others have said, when you make your reservation you can request to be placed as close to one as possible.

 

Something else to think about it to rent one of the cabins.  They have all the amenities of a hotel with a decent sized kitchen, but you get to do the camping experience. BUT, they are not by any means a cheap way to go.  On average you are looking at the high $300's to mid $400's a night.

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I'm sure it is luck of the draw but we have not had anyone with wood burning fires nor smokers near us when visiting. Also while walking around I haven't seen any campfires in the loops along the main road or Orange bus route. We always stay in premium sites so that might have something to do with it. Keep in mind it is camping so folks cook out on grills and such but you should be able to limit exposure to cooking smoke during dinner time if it bothers you (wind direction will also play into this).

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