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Old 11-05-2010, 03:32 PM   #1
Joshay2234
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Haylie's MAW/GKTW Trip in Feb. 2011

Hi everyone,
First of all, I want to thank everyone for reading. I have been so excited since Haylie was granted a wish in August and now I FINALLY have a space to get all of this excitement out of my body! I am seriously shaking as I type this, I am so darn excited!

Here is the cast of characters: Me, Lisa, mother of 2 fabulous girls and wife of Don, my awesome husband; DD - Joscelyn 8; DD - Haylie 4- wish kid.

Let me give you some background info first. Haylie was diagnosed on her first birthday with a rare malformation of the brain called Vein of Galen Malformation. In this particular vein, the Vein of Galen, there are no capillaries to slow down the blood flow to the heart or to take out necessary nutrients, thus causing the vein to swell up with all of the blood. Eventually, if left untreated, she will go into cardiac failure and that will be it. To date, she has had 13 surgeries with her 14th next week. We live in Northern Illinois and her first 9 surgeries were done at Children's Memorial in Chicago. During the 9th surgery, she suffered a stroke and lost most of the function on the left side of her body. Luckily, being young and the miracle that she is (and also with the help of amazing therapists), she regained back everything except a slight weekness on her left side. Since then, we have been traveling back and forth to NYC for her surgeries. The doctor that does them is actually the pioneer of this treatment for this rare malformation. While he does not know how many more surgeries she will need, we feel a sense of calm to know that we are finally in the right place and she is finally in the right hands.

Okay, you have a little background, now, on to the fun stuff! My mother-in-law had been telling me for a very long time that I should really think about contacting MAW and telling them Haylie's story. I had always heard that MAW was a FINAL wish so I never wanted to even think about going that route. One day, on a whim, I decided to check out the website and sure enough, I was wrong. Once I established that MAW is for children with life threatening illnesses, I filled out the online application right away!

Within days we were told that she was approved and just this week, we received our flight info and trip days. We will be going on February 20th and will return on February 26th, 2011. With my husband and I traveling so often to NYC, we decided to wait until after the first of the year so that he would have ample vacation time at work. Also, with her surgery being next week, we thought it could be something she could look forward to while in the hospital. We are going to the library tonight to stock up on Disney planning books (although I must admit, I have most of the planning done in my mind already. What can I say? I'm a go getter)!

Thanks for reading, Lisa

Last edited by Joshay2234; 11-05-2010 at 05:58 PM. Reason: Add a picture
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Old 11-05-2010, 04:00 PM   #2
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Hi Lisa,

It is nice to read your story.... I am very excited for you & your family. I hope all goes well with this surgery. My daughter is 8 & currently undergoing chemotherapy for a very rare disease, histiocytosis & someone mentioned MAW to us & the doctor said she thought it would be a great idea & like you I was not sure how it worked because I always thought it was a FINAL wish. Once we looked into it we decided to go ahead and let her be referred. We meet with her Make A Wish Coordinators next week & she wants to go to Disney. We are going to try to go in Feb or Mar, it depends on when she is cleared to travel medically. Are you planning on staying at Give Kids The World?
I look forward to hearing all your updates & to see how your planning is going.... :-)
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Old 11-05-2010, 04:15 PM   #3
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Hi!

Congrats on your wish trip! Your daughter sounds like she could use this trip & you will all have sooo much fun on it. Make sure you head over to the wish trip section of the boards & I am sure a lot more wish families will find you soon. They all are very helpful over there. I don't have a wish kid, but I love them all on here!

Again- welcome and can't wait to read more.
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Old 11-05-2010, 04:16 PM   #4
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Hi Teresa,
I am glad that your family is also going to Disney World. I am so sorry your daughter has gone thru so much, but this trip will be a great way to forget about it for a while. We are going to be staying at GKTW and are so excited.

Last edited by Joshay2234; 11-05-2010 at 04:18 PM. Reason: Misspelled name
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Old 11-05-2010, 04:23 PM   #5
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I also just found out that both of the girls have been authorized for the Bibbidy Bobbidy Boutique makeover. My wish coordinator said that it's usually just the wish kid, but they will let both Joscelyn and Haylie enjoy!

Well, off to the library to check out some more Disney books to look at during Haylie's hospital stay. Anyone know if it should be warm enough to swim in late February? Also. how does it work with restaurants at the parks. Is that something we need to bring money for or does MAW pay for all that?

Thanks guys!! So excited!
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Old 11-06-2010, 11:47 AM   #6
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Here is a picture of my miracle, Haylie. This is from lasy year's Special Olympics!

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Old 11-06-2010, 08:33 PM   #7
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Just wanted to say hi! So glad to hear your family was granted their wish. Good Luck with Haylie's surgery. Sending you good vibes. Can't wait to hear more about your trip.
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Old 11-06-2010, 08:46 PM   #8
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Haylie is adorable! We are a MAW family too, congrats on your trip!
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Old 11-08-2010, 06:27 PM   #9
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Thanks everyone for welcoming me to this website. I look forward to reading about everyone's trips. We don't go until February 20th, 2011, but we have been talking about it nonstop since Haylie was granted the wish. I am working on an itenerary and I noticed that a lot of you go to Downtown Disney while there and I know that we are getting tickets to the 4 Disney Parks, Universal Studios and Islands of Adventure and Seaworld. Is Downtown Disney someplace you can go without tickets. I know my girls would love to see the Lego store, but am not sure if we have tickets to get in.

Also, we are leaving for NYC tomorrow and Haylie's surgery is at 7am on Wednesday. Please keep her in your thoughts and prayers.

Thanks again, Lisa
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Old 11-08-2010, 09:03 PM   #10
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Downtown Disney is free! They have all kinds of cool shops there, along with restaurants and the like. It's a fun place to visit and you don't need tickets.

I will keep you guys in our prayers. Hope all goes well!
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Old 11-08-2010, 09:37 PM   #11
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oh Good luck with Haylie's Surgery. Saying a prayer for you all.
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Old 11-09-2010, 12:18 AM   #12
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Hi and welcome to the Disboards. Thank you for sharing Haylies story. She is such a trooper. We go on our MAW trip in March. Seems so long, but with the Holidays..I know it'll before we know it. Downtown Disney is free. Just lots of shops and restaurants. GKTW gives you a 3 day hopper pass to Disney theme parks, 2 day hopper pass to US/IOA, and 1 day Sea World. I'm so glad the MAW is letting both girls do the BBB. Can't wait to hear more. Thoughts and prayers for Haylies upcoming surgery.
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Old 11-12-2010, 05:16 PM   #13
Joshay2234
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Haylie's Surgery

http://www.caringbridge.org/visit/hayliehowe/journal

Here is what happened!

Thanks for all the prayers!
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Old 11-12-2010, 06:28 PM   #14
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Here are some more pics of my sweeties, Joscelyn and Haylie and the one in the middle is my sweet niece, Katelyn!









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Old 11-12-2010, 09:03 PM   #15
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Haylie is Beautiful!!! Both of your girls are! I am looking forward to reading all about your plans. My daughter, Lisa, has had 2 strokes as well. It is amazing how resilient these little ones are and how they can bounce back. God Bless you and your family!
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