Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Completed Trip Reports
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





 
 
Thread Tools Rate Thread Display Modes
Prev Previous Post   Next Post Next
Old 03-08-2009, 01:47 PM   #1
keetmommy
Mouseketeer
 
Join Date: Jan 2008
Posts: 375

Emma's Make A Wish Trip....June 15-21,2009

My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
keetmommy is offline  
 



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 07:15 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.