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Old 10-31-2010, 03:36 PM   #1
kailatilear
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Abby Girl's Wish Trip MAW/GTKW Pre Trip Report Feb 24 - March 2, 2011

Let me first introduce our family. We have 3 wonderful children. Kaila 16, Tilear 14, and Abby 8 wish child as we call her our pins and needles child. Myself (Deena) and my wonderful husband and father Steve.

How Abby came to get a wish. Abby has a disease called Osteogenesis Imperfecta aka brittle bone disease. I have this disease too, however, Abby has it more severe than I ever did. When Abby was born I suspected that she had this, however, no doctor would test her until her first break. Her first break came when she was 18 months old. We were in a mall and her leg bumped a leg of a table and I instantly knew it was broke. Ten weeks later came her second break, same leg again. When Abby was about 2 ½ she was sitting on a stool and leaned back onto a wall and she let out the worst scream. I knew something was broke, but what? Well she fractured multiple vertebrae, she was in the hospital for a week and put in a back brace. I cannot recall all her breaks, however, there have been multiple. Most of them are in her spine and vertebrae area. She has broke multiple bones in her hands from just tapping it on the door. We have found out that this disease can affect her kidneys, adrenial glands, liver, respitory organs, heart, she can lose her hearing along with her vision. We also have found out that due to the breaks in her vertebrea that she may eventually need rods put in her back. She has a wheelchair now, due to the fact that walking for a period of time, she becomes worn out and very sore. She lives on iburpophen daily, which is also not good for her internal organs. Hopefully soon we can figure out what to put her on for the bone pain. Her latest break was her knee cap, 1 week before her brace coming off, she tripped and fell and broke her femur, this was 3 months ago. We also discovered that Abby ha ADHD and asthma (due to the respitory problems). So too much coughing and there goes a rib or another vertebrea. She is so energetic and very positive with everything she goes through. It breaks my heart when I watch her watching all the other kids playing tag or riding a bike and knowing she wishes she could but knowing she can't. She just puts on a brave face and says, don't worry mom, I am having fun watching them.

When I got the call from MAW that she was approved for a wish, I was in total shock. I instantly called Steve and told him. His words were “things like this don’t happen to us.” He was very skeptical, as was I. The MAW volunteers came this past Monday 10/25 and Abby instantly decided on Disney. We have never been and she said “This is my chance to go somewhere I have always wanted to go.”

I am a full time student going back to school for special education , I have lost numerous jobs due to Abby’s medical condition and missing too much time from work. I figured I have always wanted to be a teacher, and that way I will eventually have the same hours and days as her. Steve is employed full time through a door company, so with just his income money is tight. Kaila is a typical 16 year old girl and Tilear is a typical 14 year old boy with ADHD. The two older kids have watched Abby go through so much and have said so many times, that they wish they had this disease just to give their sister a break. They are so good with her and so overprotective with her.

Abby cannot ride a bike, have a trampoline or go to many sleepovers due to her condition. So a trip to Disney is something that she can actually feel like a child with no worries.
Now we are just waiting to hear from MAW…



Kaila, Abby (Wish Child), Tilear



Steve(Dad) and Abby


Pumpkin Patch, Kaila, Abby, Tilear


Me (Deena) and Abby

Last edited by kailatilear; 11-29-2010 at 04:33 PM.
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Old 10-31-2010, 04:03 PM   #2
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So, this is our family and Abby's story. I will post updates about her MAW. Abby goes to a new doctor on Monday 11/8. UVA medical center. We finally found ** specialists for her in our area without traveling hours away.

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Old 11-01-2010, 09:27 PM   #3
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She is a beautiful little girl!! When is her wish coming true!! What is she the most excited about?
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Old 11-01-2010, 11:46 PM   #4
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Hi Deena. Thank you for telling Abby's story. She is one brave girl. Do you have dates you want to go? I love all the pictures. Nice to put faces to who you are talking about. Can't wait to read more.
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Old 11-02-2010, 10:09 AM   #5
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We have no dates yet. They just came this past Monday 10/25. I am anxious to when we will hear something . Anyone know how long it usually takes. She is most excited about going to see Mickey in person. She has never been on an airplane either. I think it is still not sinking into her that this is real . I just can't wait to know something. Thank you all so much.
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Old 11-02-2010, 02:36 PM   #6
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Hello there!!

I put a link to your TR on the Wish Trippers thread!


How long it takes really varies by organization - as some have a back log of wishes to grant and some are granted pretty fast.

I remember being on pins and needles waiting for Lauren's info to be given to us! I know you will love to get some dates!

Did they ask you what dates you prefered? Or anything like that?

You guys are going to have a blast! You get to see Mickey all over the place at Disney!
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Old 11-02-2010, 05:19 PM   #7
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I'm in on this one. Abby is such a brave girl! And what a cutie pie! Can't wait to hear more about your trip. I'm sure this truly is a dream come true for your family. I love reading these MAW TR's. They're so heartwarming.
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Old 11-02-2010, 05:41 PM   #8
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The dates we gave them when they asked were January - March. We cannot go when it is too hot due to her asthma.
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Read about Abby's PTR


http://www.disboards.com/showthread.php?t=2587282

Wish Trip Dates

Feb 24-March 2, 2011
So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

Mom Dad Kaila Tilear Abby
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Old 11-02-2010, 08:29 PM   #9
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Uggg what a day. I was at the doctor at 7 am this morning with the results of strep throat. Why didn't the people we went trick or treating with tell me it was going through their household? Had a full day of classes and a make up biology test that I missed last Thursday because of the stupid tornado that hit our neighborhood. Please pray I pass this class, because right now it is not looking promising On a good note, the nice neighbor lady brought Abby over a new coat and a new pair of jeggings
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Read about Abby's PTR


http://www.disboards.com/showthread.php?t=2587282

Wish Trip Dates

Feb 24-March 2, 2011
So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

Mom Dad Kaila Tilear Abby
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Old 11-02-2010, 09:46 PM   #10
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Your DD seems like a trooper for sure! I have a Girl Scout troop filled with 8-10 year old girls, and I know it has to be so hard for her just to watch from the side lines. Wish you guys lived near us, then she could join our troop! Hope you get your dates soon! Can't wait to read more.
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Old 11-02-2010, 09:55 PM   #11
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We actually tired to get her in something like Girl Scouts, but she did not want too. The leader I talked to didn't seem too thrilled to have a child with her condition under her watch, even though I would have been there with her. Oh well, if that is how she acted when I talked to her, I could only imagine how she would have been with Abby actually in her troop.
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Read about Abby's PTR


http://www.disboards.com/showthread.php?t=2587282

Wish Trip Dates

Feb 24-March 2, 2011
So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

Mom Dad Kaila Tilear Abby
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Old 11-02-2010, 10:06 PM   #12
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Quote:
Originally Posted by kailatilear View Post
We actually tired to get her in something like Girl Scouts, but she did not want too. The leader I talked to didn't seem too thrilled to have a child with her condition under her watch, even though I would have been there with her. Oh well, if that is how she acted when I talked to her, I could only imagine how she would have been with Abby actually in her troop.
That bites! Troop leaders are at least supposed to act like they want to be there. ** vey! Our troop is a little weird, but so are little girls! We do things our own way and are not your typical troop. But our kids are great! We take all kiddos- regardless of conditions. That's kinda the point of GS- to be around other girls who are not the same as you and meet new people. At least that's what I thought!

Hmmmm.... maybe I could get our troop to send your kiddo a Christmas card or something! They love doing that kinda thing. We did it for Piper too.... dunno if you read her Wish trip report.... my kiddos are the best little card makers! lol. Something to think about for later.
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Old 11-02-2010, 10:31 PM   #13
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Yes I read her trip report. I am slowly reading my way through them. She would love a card. She loves getting mail. As a matter of fact, last Christmas she asked for her very own mailbox and a box of her own mail. She got the mailbox, but not the box of mail. I tried to get so many people to send her cards or letters and I think she only got 3 or 4. Needless to say she wasn't very happy. She checks the mail daily to see if there is anything for her. I try to send her something now and then, but in her words "it's not as much fun if it's from mom"
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Read about Abby's PTR


http://www.disboards.com/showthread.php?t=2587282

Wish Trip Dates

Feb 24-March 2, 2011
So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

Mom Dad Kaila Tilear Abby
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Old 11-03-2010, 08:01 AM   #14
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Yeah for a new PTR!! So glad you found this website and this thread!!

So glad that Abby is getting her wish! She certainly deserves it after all she has been through, and so do you and the rest of the family! That is what is so wonderful about Disney wishes, it gives the whole family a much deserved break and a week to enjoy each other an have fun together!!

Can't wait to read more as you get dates and start planning!!

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TR- Hayley's Magical Make A Wish Trip-
http://www.disboards.com/showthread....7#post39032507
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Old 11-03-2010, 11:30 AM   #15
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Quote:
Originally Posted by kailatilear View Post
We actually tired to get her in something like Girl Scouts, but she did not want too. The leader I talked to didn't seem too thrilled to have a child with her condition under her watch, even though I would have been there with her. Oh well, if that is how she acted when I talked to her, I could only imagine how she would have been with Abby actually in her troop.
The NERVE!
Unfortunately some people seems to think children with that need a little extra attention are just a burden. Being a sick kid myself, I can sort of relate. Maybe you can looking into support groups through your local hospital for kids with disabilities. Those type of things are usually free and might give Abby a place to find a Kindred soul who is going through something similar.
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