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Disney
- Thread starter anonymous
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We went to DineyWorld 2 yrs ago and it was great!! Just make sure that you have requested a fridge in your room ahead of time if you need it for meds. The travel agent forgot to request it for us ahead of time and it took a few hours to get one. Lucky for us that they were able to get one for us the same day! Also, consider finding out what hospital near there has a CF center. Celebration hospital is the one nearest to Disney in FL and I was told "do not go to Celebration hospital for any CF related problems as they have NO CF center" by a very knowlegable CF grandmom. There is another hosp with a CF center near there though but I do not remember the name of it. HAVE A GREAT TIME!!!!!!Andrea
Hi, I have a daughter w/cf who will be turning 6 next month. I havn't taken my kids to Disney yet, but I heard that if you have a note from your doctor about your childs medical condition, you can bring it to Disney, and they will let your family go to the head of the line. People with CF can get dehydrated quickly and shoudn't be waiting on line for hours. Have a great time.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the info. We actually picked this time of year as the temp. highs usu. run around 70 and the lines aren't too bad. I think the idea is great for folks that going during the hotter season. I have a friend with an autistic son who had a note and also didn't need to stand in lines as he couldn't handle it.Take Care! Jo Ann
Jo AnnBe perpared though! Even though the temp is usually in the 70's, when we went this time a few years ago it was in the 80's everyday but one. All the days were very humid. The good thing was that there were hardly any lines for anything since we didn't go during regular "holiday" dates when everyone is out of school. We carried water with us everywhere.Andrea
I sure know about dehydrating! My boyfriend and I go to a lot of music festivals in the summer time all over the country (we're big Dead Heads). We camp and spend the whole day baking in the sun and grooving to the music. But I've been pretty beat by the heat at times and I've found a few things to work better than others. As far as fluids go, Gatorade works better than water b/c it helps replenish the sodium that we loose in our sweat. For places where I can't bring a full container in, I bring packets of it to mix with water. Pedialyte is good too. Neither have too much sugar and both provide electrolites. Remember to bring some high protien snacks, I like Luna bars, they taste great! It can be hard, especially on vacation, but limit sodas. Go for lemonade when you're walking in the park. Something as simple as wearing a hat can make a huge difference for me.Have fun,Debbie 22 yr old w/ CFdon't forget the sunscreen!
We traveled to Disney the January after 9/11. Our travel day was the day that all sorts of new rules went into effect at the airport. I brought a letter for the meds and the nebulizer too. It was a good thing because I had to completely unpack my med/neb carry on bag and show what that thing was! The note was good because the person at the gate had no idea of what a nebulizer was, so it was defiately a help. Andrea
In 2000/01 we spent a week at "Give Kids The World" in Kissimmee. Disneyworld are one of the main sponsors of GKTW and although it may be too late to organise now you should find out if they would be able to help you. Have a look at their website www.gktw.com I would need hundreds of pages to describe the fun my son, his mother and I had at GKTW but one of the things arranged for the kids was VIP treatment at Disneyworld, Seaworld & Universal Studio's. This meant no standing in lines, personal meetings with the Disney Characters etc. GKTW also arrange transport to and from the Theme Parks, breakfast & dinner, entertainment plus plus plus. The staff at Disney etc are always on the lookout for the GKTW button that the kids get and go out of their way to make the kids visit a special experience.Find out about GKTW, it was an absolutely awesome experience. Look at their website and see what you have to do to get to spend a week there (even their new website is great).Enjoy your visit to Disney. If you want more details about GKTW feel free to email me at glenn.prince@spunchem.co.zaGlennSouth Africa
Thanks everyone! We are back and had a great time!!!! Jason did have a flare up while we were there, but we were able to handle it with extra treatments and started TOBI again. I should have brought orapred but forgot. Since we have been home, the TOBI is kicking in and he is feeling better. Disney and the cruise were amazing. This time of year is fantastic - no long lines or heat! Thanks again. Jo Ann
I definitely agree about going this time of year....we went last year during the first week of March...for Bailey's 5th birthday. The weather was wonderful. I didnt have any probs while we were there. I even started getting a sinus infection before we left.....but when we got there...it cleared up! I'm glad we got to take her while I am still "healthy". I hope there are many more years to come.Dea
i went to disney world in 1st grade and i loved it and i woudl love it now even though i'm 15 i'm replying to you becuase i'm doing a research paper on cf and i thought this site would help me. I"m still not 100% sure at what cf is but if u want my my opinion i think your son would have a blast on the trip. i'm not really sure how much the he would like the cruise though and i dont no how that would effect him but i hope i maybe helped you and i'm sorry if i wasn't any help. ~Anna~
I have to agree with the trip GKTW in florida my daughter is 5yr we went last oct I can not explain how wonderful it was we had the best time ever and I know she will never forget the trip either. The people at give the kids the world were so kind and giving I would have to say my daughter brings that vacation up everyday, we never stood in a line anywhere and we had a photo with pretty much every character we saw no matter how long the line was and the weather was ausome.... Emily mother of sierra
We have had such positive experiences at Disney that we bought a timeshare. We look forward to sunshine and Mickey after a long winter of illness and missed school days. Ask your doctor for a letter and bring it to guest relations, It definately helps to not spend time in the hot sun. We prefer to stay in WDW because it it so convenient. If anyone is interested in renting a Diney Vacation Home Villa, please contact me.
Plane travel is a big thing with CF, if your sons lungs dry out easily do and albuterol or saline before you go on the plane to help mositen the lungs, you can do this before you leave for the airport or if they have a family bathroom or kids center in the terminal you could do a treatment of something, only if your son has to bring a neb machine with you. I'm 19 w/CF and my lungs get dried out easily on the planes. Since it is January flu and colds will be going around like wildfire, I've worn a facemask on a plane a few times, I know your son may not want to do this but its good this time of year for blocking possible infections. Just a few ideas.
Re : GKTW I haven't had any problem accessing their website www.gktw.com but basically GKTW was started by Henry Landwirth (sp?) (a Holocast survivor & Florida hotelier) for kids with life threatening illnesses to get away from their daily routine and enjoy the theme parks in Orlando. The "Kids Village" as it is known has approximately 200 2-bed homes where kids and their families can stay for 6 days. The village provide breakfast & dinner, transport to and from the theme parks and vip access at the parks plus a whole lot more. The village on it's own is awesome and spending the week there alone would be a great holiday. There are lots of things for the kids to do and there is an icecream parlor. The people at the Village (mostly volunteers) are so friendly and caring and do so much for the kids and their families. I am just speaking here from personal experience but if your child is eligible to go to GKTW you definitely need to go."Contact your local wish-granting organization to learn if your child is eligible for a wish, or call 1-800-995-KIDS, and Give Kids The World can refer you to the wish-granting organization in your community." www.gktw.com