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Old 02-24-2012, 06:22 PM   #1
connie005
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my first post

Hi my name is Connie and i am a mother of 4.
First off i never thought i would be on this site for disney or wishes(its really weird)still can't get over it.
my oldest jordan is 19 then its tommy 14 amanda (wish kid) 12 and ryan 4.

amanda is everything to me my only daughter so happy but everything changed on jordan's birthday last year.she was losing weight she would sleep all the time finally she started getting headaches i went to our local clinic and they said it was her sinuses acting up.they gave meds and we were on our way.
the meds didn't work so we went to childrens hospital they saw a growth in her nose said we had to see a specialist when we saw the specialist they were not sure so they had her take a scan.they saw a growth big as a golf ball in her sinuses they thought it was cancer so they decided to do a biopsy.

the biopsy came back negative for cancer we were relieved but also worried cause the docs had no idea what it was.after ct scans ,blood test etc we found out that amanda had wegeners granolomatosis a very rare vasculitis disease.we were floored they told us it is very rare in children infact even looking on the net is difficult.but throughout all this amanda has been amazing.she went through chemotherapy treatments steroid injections nose surgeries and she always held her head up high.she found out about maw through a friend she found online and she called herself!!when i got home from work she said mom i called make a wish today,i was surprised at how amazing she is for doing that.

we received a call from maw asking for our email so we could print and sign papers so they could get intouch with her doctors.

3 weeks after that we received our first visit with maw volunteers it was amazing they ask her 3 wishes and of course the first one was disney.

and that is how i got here i was looking up info on maw disney wishes.i have been reading posts by truly amazing families and its a true blessing to find out that we are not alone in our struggles.

make a wish said for us to start doing our passports but we do not have a date yet. but i will keep everyone posted
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Old 02-24-2012, 06:28 PM   #2
Bete
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Arrow Welcome to our Disney boards.

Make a Wish is trully a wonderful organization.

I hope your trip is great for Amanda.
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Old 02-24-2012, 08:29 PM   #3
loveappletrees
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Welcome Connie, I am a newbie here too.(like less than a week).
We are planning our sons Rainbow wish trip and that's how I found the board. I have learned alot in a very short time. One tip is to have a notebook handy to jot quick notes down while you read!


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Our Pre-Trip report: http://www.disboards.com/showthread.php?t=2880842

*To see the wish reveal video*: http://www.youtube.com/watch?v=Fd4gCZIcQq4

*its kinda cheezy

"Here's to the crazy ones. The misfits. The rebels. The trouble-makers. The round heads in the square holes. The ones who see things differently. They're not fond of rules. And they have no respect for the status-quo. You can quote them. Disagree with them. Glorify, or vilify them. But the only thing you can't do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world Are the ones who do.

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Old 02-24-2012, 08:46 PM   #4
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Do you live outside the US? If not, I'm not sure why they would ask for you to do passports just to come to WDW. It's always a good idea to have them but not necessary for travel w/in the US. Keep us posted when you get your dates. Have you been to WDW before or will this be Amanda's first trip?
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Old 02-25-2012, 04:37 AM   #5
connie005
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we live in montreal quebec canada. and yes this is our first trip anywhere.
the whole family loves disney ever since my first son was born.
jordan he loved abu from alladin,tommy was always mickey,amanda its beauty and the beast and ryan its buzz and woody.

in montreal here is mostly french so its very hard to come by english toys for the kids (except walmart when they have it in stock) so amanda is really looking forward for disney its her dream since she`s been little.
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Old 02-25-2012, 11:36 AM   #6
dclfun
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Now I understand about the passports! You will have an amazing trip, especially if it's your first visit. Have you found the WishTrippers thread? There are completed trip reports there as well as trip planning threads to help you. Do you know yet if you will be staying at Give Kids the World ( commonly abbreviated as GKTW) or at another location?
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Old 08-16-2012, 11:34 PM   #7
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Amanda is amazing & inspiring, as are you, Mom! I just saw an idea today of taking pillowcases & sharpies so you can get the pillowcases autographed rather than a book. This might be a great (relatively cheap to boot!) cherished souvenir for years to come as well as a comforting item. You should definitely think about making shirts for the family to add to the magic while you are at the World & to pass the time at home & keep excitement high. MNSSHP is AMAZING! I would recommend you take an extra bag/backpack so you can empty your kids goody bags as needed. The bags seem to have gotten smaller over the years, like everything else! Will be following your story & offering prayers & pixie dust.
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Old 08-17-2012, 06:46 PM   #8
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Quote:
Originally Posted by ToddyLu
So what is the "Big Give". I know it has something to do with GKTW---inquiring minds.
Wondering the same thing....
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Old 08-17-2012, 07:01 PM   #9
connie005
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the big give is a wonderful group of disers that make a wish childs trip even more magical by sending custom gifts

just like you did toddylu

i have read past wish trips with families who participated in the big give and the looks on the childrens faces were priceless.
its just amazing watching a child open a gift and know it was sent from people ho just want to make that child feel more special than they already are

its been a couple of weeks now that my house has been filled with disney music by toddylu. we all sing together and its just more memories to share
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Old 08-18-2012, 09:49 AM   #10
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Fantastic to know I am already participating!! So glad you guys are enjoying the music! I am listening to it as I type. Have a great weekend...

from your Southern Peep.
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Old 08-22-2012, 11:16 AM   #11
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Hi guys
Remember when I said we received tickets from the hospital for "how to train your dragon"
Well we went and it was amazing the kids had so much fun. Even I was into it .
I thought it would really be boring but wow the effects the dragons were so lifelike.
We took pics of the show will post them soon.
Hope everyone is doing great.
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Old 08-25-2012, 07:20 PM   #12
connie005
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update

Hi guys

well this week Amanda had 2 doc appointments
one was an MRI which was funny
the first time she was in the MRI machine broke so the whole day she was laughing saying she broke the machine lol
they re-scheduled for 2 days after at the same time as her normal doc appointment.

that one went good they did not see any signs of her disease coming back but because we did not get her MRI done they could not go down on her medication.
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Old 09-10-2012, 09:20 PM   #13
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Are you guys doing Medieval Times? I completely missed that. We went last July to the one in Dallas. DH and I have talked about trying to take the kids when we were in Orlando. I am not sure when it will work though. I got the veggie meal and it was amazing, plus you get silverware with the veggie . I love their soup and bread! I could eat it all day every day!
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Old 08-27-2012, 03:27 PM   #14
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Oooh! I can't wait for How to train a dragon to come here! Was it fun?
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Old 08-27-2012, 03:42 PM   #15
connie005
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Quote:
Originally Posted by EEs*Mommy View Post
Oooh! I can't wait for How to train a dragon to come here! Was it fun?
we had 4 tickets myself, Amanda (13) , Ryan (4) and Jordan (20).
tommy stayed back he didn't like the movie

I thought only the younger ones would love it but i was surprised we all did the special effects were amazing. and the dragons were WOW they even flew around. everyone just loved it
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