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
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
I guess I would have had to take it off, huh! 
) and I was there to meet a few wish families that I have come to know on here...but it is a standing invitation for anyone that has been part of a wish trip to GKTW.
