Emilyswish
Mouseketeer
- Joined
- Oct 28, 2010
Our daughter, Emily, has been granted a trip to Disney through MAW and we'll be visiting the World and staying at GKTW 12/27/10-1/2/11!!!
I am brand new to the DISboards and have never been to Disney with the kids, so let me know if I'm doing this wrong!!
More on Emily's condition below . . .
The cast:
Aimee (33): The very proud mommy to four amazing kids! I love scrapbooking and photography, singing and musical theater. My favorite Disney movie is Beauty and the Beast (The Lion King is a close second - but the princess love story wins out!) I used to be a Kindergarten teacher but resigned when Drew was 2 1/2 so we could focus on growing our family! And boy did we! Now I'm a stay at home mom to 4 after having boy/girl/girl triplets in 2007.
Gee-off (35): His real name is Geoffrey but EVERYONE calls him Gee-off, including his principal, colleagues, etc. He's a HUGE Philadelphia sports fan and loves his Phillies and Eagles. He also loves singing and musical theater, which is how we met, and video games! Favorite Disney movie: The Lion King.
Drew (turns 7 right before our big trip!): Big Brother extraordinaire, super reader, soccer fanatic and video game lover. His favorite Disney movie right now is probably Mater's Tall Tales.
The Trio: (in birth order)
Carter (3): He is our little peanut, smaller than both of the girls. My little blond haired, blue eyed, snuggle man. He loves, cars, trains, monster trucks and figuring how things work. He is a sensitive little guy and his favorite disney movie is Cars.
Brenna (3): She is our wild child, diva girl, and social butterfly! She loves to dress up, wear fancy shoes and jewelry and just anything girly or princessy. In fact she actually cries when I make her wear pants! Favorite Disney movie: Beauty and the Beast (She also loves Snow White and we just got Sleeping Beauty!). Fave princesses are Sleeping Beauty, Belle, and Cinderella, probably in that order.
Emily (3 and our Wish child): Our little sweetheart. For all she has had to endure, she is the sweetest girl you'll meet. She'll melt your heart with a smile or a giggle. She can't really watch TV, but she loves all of the disney movie music.
We are so excited that Emily has been granted a wish trip to Disney through Make a Wish!!! She is a miracle child and has been through so much in her short life.
She was born with an extremely rare chromosome disorder, called an Unbalanced Translocation of chromosomes 7 and 9) that has left her facing many medical issues. We did not know about her condition at birth, her issues started appearing at 4 months old, with the onset of her seizure disorder. She is gtube fed, is legally blind with a cortical visual impairment but has awareness of lights and things really close up, she also has epilepsy (seizures called infantile spasms), hypoglycemia, kidney reflux, and global developmental delays. At 3 years old she functions on the level of a 5-6 month old. She can sit up with support, hold small toys, and roll, but she can not crawl, walk, talk, or eat by mouth. She is doing really well right now, and is making progress everyday which is so awesome!! She just started school and it has been fabulous! We love it and she loves it too.
A friend of mine had given me MAW paperwork when the babies were 1 and at the time I really didn't think it was for us (and by that I mean, we weren't ready to accept that Em has an incurable life threatening condition
). But her condition is so rare that we have only heard of 2 other cases in the world (through a chromo disorder website) and there is no data on outcomes or prognosis for this diagnosis. We literally have to take it day by day. So when the babies turned 3 this summer I decided to go ahead and fill out the MAW forms now, because we want her to get to go to the Happiest Place on Earth asap! We actually weren't sure we what to wish for for her at first since she couldn't wish for herself, but in the end obviously chose Disney because of their reputation accomodating families with children with disabilities.
Everything happened very fast for us - our neurologist told me she had gotten the MAW forms and within 2 weeks the volunteers contacted us, we had our meeting, made her wish and about 2 weeks later we found out she was approved!!! We had chosen our dates around my husband's school schedule (he teaches 6th grade Math) and wanted to make sure we did not go in the summer because Emily does not handle the heat well. So we chose Christmas vacation week as our first choice but really never thought we would get to go THIS year!!!! But, our coordinator called and said she had a flight and was 12/27-1/2 ok for us? YES!!!!!!
She told us about Give Kids the World Village and that they would try to get us in there, but if not we would stay at a Disney Hotel but probably need 2 rooms due to the size of our family. So we crossed our fingers for GKTW. A few days later we got a letter from our coordinator confirming the travel dates and details of rental van, strollers, car seats etc., and it said we were indeed going to stay at GKTW!!!!! Wahoooo!
So, now I am really excited. We know that Emily won't be able to ride many rides, but we are hoping to see lots of shows, parades and fireworks which she really responds to!!! I'll have to share some pictures, she has the most amazing smile!! Oh, I do LOVE to take pictures! So hopefully you won't mind if I share lots.
I originally found the DIS boards when I was googling "disney with a child in a wheelchair" and found someone's trip report (I have read so many now I can't remember whose was the first, maybe wendygrace?!) I am so glad I found it, I have been reading lots of trip reports, getting the details on GKTW and all the parks.
I have lots of questions and plan to hang around here often until we leave for our trip! Thanks for having me!
Tentative Schedule
What I'd like to see/do at each park
Emily's Story with Pictures Part 1
Emily's Story with Pictures Part 2
My homemade countdown calendar
Daddy's Trip Report on our blog!
I am brand new to the DISboards and have never been to Disney with the kids, so let me know if I'm doing this wrong!!
More on Emily's condition below . . .
The cast:
Aimee (33): The very proud mommy to four amazing kids! I love scrapbooking and photography, singing and musical theater. My favorite Disney movie is Beauty and the Beast (The Lion King is a close second - but the princess love story wins out!) I used to be a Kindergarten teacher but resigned when Drew was 2 1/2 so we could focus on growing our family! And boy did we! Now I'm a stay at home mom to 4 after having boy/girl/girl triplets in 2007.
Gee-off (35): His real name is Geoffrey but EVERYONE calls him Gee-off, including his principal, colleagues, etc. He's a HUGE Philadelphia sports fan and loves his Phillies and Eagles. He also loves singing and musical theater, which is how we met, and video games! Favorite Disney movie: The Lion King.
Drew (turns 7 right before our big trip!): Big Brother extraordinaire, super reader, soccer fanatic and video game lover. His favorite Disney movie right now is probably Mater's Tall Tales.
The Trio: (in birth order)
Carter (3): He is our little peanut, smaller than both of the girls. My little blond haired, blue eyed, snuggle man. He loves, cars, trains, monster trucks and figuring how things work. He is a sensitive little guy and his favorite disney movie is Cars.
Brenna (3): She is our wild child, diva girl, and social butterfly! She loves to dress up, wear fancy shoes and jewelry and just anything girly or princessy. In fact she actually cries when I make her wear pants! Favorite Disney movie: Beauty and the Beast (She also loves Snow White and we just got Sleeping Beauty!). Fave princesses are Sleeping Beauty, Belle, and Cinderella, probably in that order.
Emily (3 and our Wish child): Our little sweetheart. For all she has had to endure, she is the sweetest girl you'll meet. She'll melt your heart with a smile or a giggle. She can't really watch TV, but she loves all of the disney movie music.
We are so excited that Emily has been granted a wish trip to Disney through Make a Wish!!! She is a miracle child and has been through so much in her short life.
She was born with an extremely rare chromosome disorder, called an Unbalanced Translocation of chromosomes 7 and 9) that has left her facing many medical issues. We did not know about her condition at birth, her issues started appearing at 4 months old, with the onset of her seizure disorder. She is gtube fed, is legally blind with a cortical visual impairment but has awareness of lights and things really close up, she also has epilepsy (seizures called infantile spasms), hypoglycemia, kidney reflux, and global developmental delays. At 3 years old she functions on the level of a 5-6 month old. She can sit up with support, hold small toys, and roll, but she can not crawl, walk, talk, or eat by mouth. She is doing really well right now, and is making progress everyday which is so awesome!! She just started school and it has been fabulous! We love it and she loves it too.
A friend of mine had given me MAW paperwork when the babies were 1 and at the time I really didn't think it was for us (and by that I mean, we weren't ready to accept that Em has an incurable life threatening condition
). But her condition is so rare that we have only heard of 2 other cases in the world (through a chromo disorder website) and there is no data on outcomes or prognosis for this diagnosis. We literally have to take it day by day. So when the babies turned 3 this summer I decided to go ahead and fill out the MAW forms now, because we want her to get to go to the Happiest Place on Earth asap! We actually weren't sure we what to wish for for her at first since she couldn't wish for herself, but in the end obviously chose Disney because of their reputation accomodating families with children with disabilities.Everything happened very fast for us - our neurologist told me she had gotten the MAW forms and within 2 weeks the volunteers contacted us, we had our meeting, made her wish and about 2 weeks later we found out she was approved!!! We had chosen our dates around my husband's school schedule (he teaches 6th grade Math) and wanted to make sure we did not go in the summer because Emily does not handle the heat well. So we chose Christmas vacation week as our first choice but really never thought we would get to go THIS year!!!! But, our coordinator called and said she had a flight and was 12/27-1/2 ok for us? YES!!!!!!
She told us about Give Kids the World Village and that they would try to get us in there, but if not we would stay at a Disney Hotel but probably need 2 rooms due to the size of our family. So we crossed our fingers for GKTW. A few days later we got a letter from our coordinator confirming the travel dates and details of rental van, strollers, car seats etc., and it said we were indeed going to stay at GKTW!!!!! Wahoooo!
So, now I am really excited. We know that Emily won't be able to ride many rides, but we are hoping to see lots of shows, parades and fireworks which she really responds to!!! I'll have to share some pictures, she has the most amazing smile!! Oh, I do LOVE to take pictures! So hopefully you won't mind if I share lots.
I originally found the DIS boards when I was googling "disney with a child in a wheelchair" and found someone's trip report (I have read so many now I can't remember whose was the first, maybe wendygrace?!) I am so glad I found it, I have been reading lots of trip reports, getting the details on GKTW and all the parks.
I have lots of questions and plan to hang around here often until we leave for our trip! Thanks for having me!
Tentative Schedule
What I'd like to see/do at each park
Emily's Story with Pictures Part 1
Emily's Story with Pictures Part 2
My homemade countdown calendar
Daddy's Trip Report on our blog!
So glad you get to go to Disney. 
You're family will have such a great time!
