Hi everyone I am new here.

Fiona'smom

Earning My Ears
Joined
Sep 20, 2008
Messages
5
I am not sure where to start. I had a woman come into my job who told me about this site for my daughters make a wish trip.

Are there any parents of transplant kids on here that can help me know where to start??:confused3

Besides this site is wonderful.
 
Hi and :welcome: to both DisBoards and disABILITIES!

You might start by clicking 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 #3 has links to information and reports about Wish Trips and Give Kids The World Village.

Or, if you want an easier route, click on the link in my signature.

Giving a little more information will help, such as where you will be coming from, when is the trip, ages of people traveling, what specific problems your daughter has, etc. Information such as this will assist us to better help you. And since we don't know real names many people do feel comfortable in giving personal information.
 
Here is a little information about our crazy family.:) Up until October 2007 we had a normal family and then we went to the Texas state fair, Then the ball began to roll. Fiona started out acting like she had an ear infection (Friday). Mild fever and lethargic, the lethargy got worse 3 days after the first symptom she turned yellow (Monday). We took her to the ER they told us she had Hepatitis. Then tested her for Hep. After sending her home I took her to the doctor the next day (Tuesday) and she was tested a second time for hepatitis. Wednesday the doctor called and stated she didn't have Hep. and if she started to run a higher fever to take her to Cook's Children's in Fort Worth, TX and that night she got worse. We sat in the ER for 6 hours for them to tell us she had Hepatitis again and when we told them the test came back negative they told me the test was wrong then and set her up with an appointment with a GI doctor on Thursday. When Thursday came she went and was admitted to Cook's for observation. Fiona got worse still and the doctors didn't know what was wrong with her still. (Saturday)The initial doctor at Cook's sent her information to Children's Medical Center Dallas and she was transported over to that hospital within 12 hours. That was when we were informed Fiona had Acute Liver Failure due to a Virus.

All I could think was how can this happen to my baby??? But with the transplant team looking out for her she went in to have a biopsy and then went to the ICU. Within a 10 day period Fiona went from being a healthy 2 1/2 year old to dying. On October 28th Fiona received her first liver transplant. It lasted 15 days, too small for her body. On November 11th, 2007 Fiona received her second transplant.
Since October 20th, 2007 Fiona has had 12 surgeries and 12 biopsies in her little body and has lost mobility in her legs and 14 pounds. BUT my baby girl is with us today and plays like everyday is her last.:angel:

Now when reading this I want everyone to know I didn't tell this to make anyone feel sad. Because a miracle happened and I am listening to her play with her little Dora phone while I type. So smile and hug your kids. I know I will.:love:
 

If you're with MAW, I'm guessing you'll probably be staying at Give Kids the World; we haven't had a wish experience, so I bet someone else will give you info on some of the specifics. First of all, Welcome!!! I bet your princess will love Disney, and goodness knows, your family can sure use this vacation.:) Do you know when your trip is going to be? Weather and crowd levels can definitely affect your daughter (and family's) stamina. We're here anytime to answer any questions, and help you however we can:hug:
 
We did Make a Wish trip to Disney last December and it was awesome. Staying at Give Kids the World is indescribible. Everything there is free and there are activities especially set up for the kids and I mean all the kids because they will include siblings. You will get 3 day park-hopper passes to WDW, 2 days to IOA/US and 1 day to Sea World. You will get free parking at the parks as well. There are other amenities you will get too. One place to get a lot of information is on the community board here. I think there may be a few transplant kids there. The thread is called Wishtrippers unit. It's by people who have done, are doing and plan to do wish trips to Disney (mostly WDW but a few to Disneyland or Disney Cruise). If I can answer specific questions ask away. Karen
 
Do you know when your trip is going to be? :hug:

The dates we chose are December 17-23:bitelip: but the other date we chose is December 11-17 I think. I am so excited i don't remember the date:laughing:
Every time someone asks Fiona about where she is going in december she looks all excited and yells DisneyWorld!!! I know it will be great and now that I showed my oldest this site she is trying to read all they have to say on the teen side of the board.
 
My son and our family went on a MAW 3 years ago and it was awesome! We went in late August, and GKTW was full, so we were put up at the Beach Club! :dance3: We know of another family who also could not get in to GKTW and they were put up at AK! Anyway, you will love it. We did not do much at GKTW due to the fact that we were on site, but we did go for a couple of dinners and they have a special character greeting there with pictures once a week or so. They treat all families very special. Good luck and have fun! :cool2:
 














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