Disney Information Station Logo

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





Reply
 
Thread Tools Rate Thread Display Modes
Old 10-29-2010, 03:39 PM   #1
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Happy New Year 2011! Emily's MAW/GKTW Trip - The Final Gives!

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!

Last edited by Emilyswish; 01-15-2011 at 10:59 PM.
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 11:31 AM   #2
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Pictures of us

Here is the most recent family pic of us



That's me, Brenna, Gee-off, Emily, Drew, and Carter in the front!

The pic I took for Dh for father's day



Christmas 2009



Halloween 2009



I also have a blog that I kept updated pretty well until earlier this year, the last few months or so are missing.
www.wecouldnotaskformore.blogspot.com

Thanks for looking!
Emilyswish is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 10-30-2010, 04:00 PM   #3
SueM in MN
It's like combining the teacups with a roller coaster

 
SueM in MN's Avatar
 
Join Date: Aug 1999
Location: Twin Cities area,Minnesota,USA
Posts: 30,535
DISboards Moderator



If you have not found it yet, follow the link in my signature to get to the disABILITIES Board.
Near the top of the thread list, you will find the disABILITIES FAQs thread, which should be helpful to you - especially post #3 - and the WISH TRIPPERS CENTRAL thread, which is a thread for families who are going or have gone on MAW trips.

I think you will find that Emily will be able to go on almost everything that her brothers and sisters go on. For many rides, you will be able to hold her in your lap or next to you, so her not being able to sit without support won't be an issue. Some attractions have seats with low backs, so you will need to support her head if she doesn't have good head control.
__________________
SueM in MN
Moderator of disABILITIES
Link to disABILITIES FAQs thread

Spaceship Earth: We are all passengers together.
Life is what happens to you when you're busy making other plans......John Lennon
Be a rainbow in someone else's cloud. Dr. Maya Angelou
trip report link in Memory of eternaldisneyfan, who lived these words: Some people are always grumbling because roses have thorns. I am thankful that thorns have roses. Alphonse Karr
SueM in MN is offline   Reply With Quote
Old 10-30-2010, 05:35 PM   #4
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Thank you Sue! I did read that we should be able to carry her on any ride that doesn't have a height restriction. Does that sound right?

Luckily my oldest isn't big on thrill rides, so we are only going to be trying the calmer kiddie rides anyway.
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 05:38 PM   #5
billwendy
DIS Veteran
 
billwendy's Avatar
 
Join Date: Aug 1999
Location: essington, PA
Posts: 4,938

HI!!!!

So, do you have any plans yet? The kids are just so adorable!!!! I have been to GKTW before and its just AWESOME!!!!!

for Em's trip!!
__________________
Wendy Billy and our fur ball Tigger

Traumatic Brain Injury 2/5 & 9/6/2013
March is TBI Awareness Month!
Life changes in an instant! Shine On!
billwendy is offline   Reply With Quote
Old 10-30-2010, 05:44 PM   #6
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Hi billwendy (Wendy is my mom's name!)

Thanks!

We just have our dates and plane reservations, but I don't have plans as far as what we'll be doing each day yet. It seems that GKTW gives families 3 days WDW, 2 at US, and 1 at SW from what I've read here, but I haven't been told that is the case for us (they didn't didn't tell us anything about tickets and we just wished for DisneyWorld). Is that what all GKTW families get? That'll help with planning for sure!
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 05:46 PM   #7
tinytreasures
DIS Veteran
 
tinytreasures's Avatar
 
Join Date: Oct 2008
Posts: 1,696

Your family is beautiful
You are going to love GKTW it is amazing. Take the time to really look around and enjoy it.
Can't wait to hear all about your plans
My biggest tip for wish families is to stop and smell the roses.
tinytreasures is offline   Reply With Quote
Old 10-30-2010, 05:48 PM   #8
billwendy
DIS Veteran
 
billwendy's Avatar
 
Join Date: Aug 1999
Location: essington, PA
Posts: 4,938

Quote:
Originally Posted by Emilyswish View Post
Hi billwendy (Wendy is my mom's name!)

Thanks!

We just have our dates and plane reservations, but I don't have plans as far as what we'll be doing each day yet. It seems that GKTW gives families 3 days WDW, 2 at US, and 1 at SW from what I've read here, but I haven't been told that is the case for us (they didn't didn't tell us anything about tickets and we just wished for DisneyWorld). Is that what all GKTW families get? That'll help with planning for sure!
Some wishes are a little different if there is something special a child has wished for - like if Emily LOVES poohbear, you should ask for breakfast with pooh to be included in her wish - things like that. When we went last year with the Philly branch of MAW, that is what we got. THere are also other tickets available there for a mini golf course nearby, maybe the space center and a few other places. Im so excited for you to go!!!! Are you bringing any help along with all those beautiful kids????

There are lots of fun things to do right at GKTW too!!!! parties and horseback riding and a choo choo and a merry go round!!! ITs so fun!!!!
__________________
Wendy Billy and our fur ball Tigger

Traumatic Brain Injury 2/5 & 9/6/2013
March is TBI Awareness Month!
Life changes in an instant! Shine On!
billwendy is offline   Reply With Quote
Old 10-30-2010, 05:49 PM   #9
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Thank you Kathleen, I'll have to check your MAW trip link soon!
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 05:54 PM   #10
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Oh my gosh, I can't even believe how amazing GKTW is just from reading about it on the board here!!! My kids are going to just be in heaven and i am already in tears thinking about how awesome it is going to be that everything will be completely accessible for Em, like the playground and the train, and the bathroom in the villas!!

i seriously can not wait - i am more excited than the kids, because I know how thrilled they are going to be!!

We have nurses that help us with Em at home/school but we decided against the nurse coming with us because we just want it to be a family thing. Also, since we're going during the Christmas break our nurses will want to be with their families.

My hubby and I are a pretty good team, I know it will be overwhelming and exhausting, but we're up for the challenge!!!

Last edited by Emilyswish; 01-11-2011 at 10:12 AM.
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 05:57 PM   #11
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Quote:
Originally Posted by billwendy View Post
Some wishes are a little different if there is something special a child has wished for - like if Emily LOVES poohbear, you should ask for breakfast with pooh to be included in her wish - things like that. When we went last year with the Philly branch of MAW, that is what we got. THere are also other tickets available there for a mini golf course nearby, maybe the space center and a few other places. Im so excited for you to go!!!! Are you bringing any help along with all those beautiful kids????

There are lots of fun things to do right at GKTW too!!!! parties and horseback riding and a choo choo and a merry go round!!! ITs so fun!!!!
Emily is not real particular about characters because of her vision and neurological status, but she does LOVE the color orange, so I think she's a Tigger kind of girl! We do not have any ADRs scheduled, I didn't even know that was a possibility. That's what so great about this board!
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 06:05 PM   #12
billwendy
DIS Veteran
 
billwendy's Avatar
 
Join Date: Aug 1999
Location: essington, PA
Posts: 4,938

Quote:
Originally Posted by Emilyswish View Post
Emily is not real particular about characters because of her vision and neurological status, but she does LOVE the color orange, so I think she's a Tigger kind of girl! We do not have any ADRs scheduled, I didn't even know that was a possibility. That's what so great about this board!
Awwww - maybe a meal at the Crystal Palace? you would want to contact your MAW people ASAP though if there is anything you'd want to add....or even just mentioning to them that she loves orange and would like to meet Tigger!!! lol....

Emily will get a special pass that will help you guys get through lines much more quickly which will help with the kids too!!!

Does she have a wheelchair? I forgot to mention, Im an OT!!
__________________
Wendy Billy and our fur ball Tigger

Traumatic Brain Injury 2/5 & 9/6/2013
March is TBI Awareness Month!
Life changes in an instant! Shine On!
billwendy is offline   Reply With Quote
Old 10-30-2010, 06:13 PM   #13
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

I do have a list of questions I've been thinking of for the coordinator so maybe i'll ask about Tigger!

Yes, she does have a wheelchair, she uses a Kidkart right now. That's awesome you are an OT, right now we are working with Emily on grasping objects and reaching. She has been holding crayons and paint brushes at school and sometime grips her toys with both hands, she is amazing!
Emilyswish is offline   Reply With Quote
Old 10-30-2010, 06:28 PM   #14
disneychic2
DIS Veteran
 
disneychic2's Avatar
 
Join Date: Sep 2010
Posts: 4,979

What a beautiful family! So glad you get to go to Disney. You're family will have such a great time!
Enjoy!!!!!
Blessings to you all!
__________________
disneychic2 is offline   Reply With Quote
Old 10-30-2010, 06:39 PM   #15
Emilyswish
Mouseketeer
 
Emilyswish's Avatar
 
Join Date: Oct 2010
Location: South Jersey
Posts: 418

Thanks so much Disneychic2!
Emilyswish is offline   Reply With Quote
Reply



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 01:06 PM.

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

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