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Old 08-17-2012, 08:51 PM   #1
DelanaAndKyra
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Kyra's Make A Wish PTR

Hi my name is Delana and I am a single mom to a beautiful little 4 yer old girl named Kyra.

Kyra was born a healthy baby and then at 7 weeks old got very sick. I found out after a horrible experience going in to the ICU that she had a heart problem called dilated cardiomyopathy with aortic insufficiency. She proved what a fighter she was and after a couple of months of struggling she did amazing for 2 years with just some pneumonias and colds every once in awhile.

In the summer of 2010 things started to change again for Kyra. She was sick all the time, she had a low grade fever almost daily, she had a mysterious rash that kept coming and going on her body. She had many ear infections and many many chest infections and pneumonias. In september of 2010 she lost all balance, could barely stand, was very very sleepy. It turns out that the mysterious rash was a viral infection brewing in her body and caused ost viral cerebral ataxia. 2 days after diagnosis i found her in her crib not breathing. She came back around again and seemed ok for awhile as far as balance went. She was later diagnosed with asthma, malabsorbption, a gene dupication that we are still trying to figure out and constipation issues.

During 2011 Kyra started complaining of headaches, she was having random fainting as well. They did an EEG that came back clear and decided to do an MRI. They discovered she has chiari malformation type 1. in February of 2012 she had a repeat MRI which we were told was no change. She began having more frequent fainting spells and then in June she become unresponsive for over 10 minutes and decided to let a neurologist to take a look as a second opinion. It turns out that her chiari malformation had gotten worse and she now had a syrnix as well (build up of spinal fluid in the spinal cord). She was actually supposed to have the chiari decompression surgery today but was rescheduled for next Friday.

All of this is why we contact the Make A Wish foundation to have Kyra have her wish to go to Disney world in May of 2013 and meet the princess'. She was approved Just before Christmas and we have been enjoying the experience of having Make a Wish in our lives. We are very excited about being able to go on this trip and just get a break from the constant doctors and constant appointments.


DATE CHANGE!!!!! We are now going November 24th, 2012- December 1st, 2012!!! Wooohoooo!

Last edited by DelanaAndKyra; 11-03-2012 at 12:33 PM. Reason: date change
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Old 08-17-2012, 11:43 PM   #2
carebearkidney
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Welcome to you and your little princess Kyra! Looking forward to reading about her wish adventures as they unfold.
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Old 08-18-2012, 01:22 AM   #3
Lilfoot93
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Welcome! I'm glad that sweet Kyra is getting her wish! We too are going next May for Trevor's wish trip.

Jackie
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Old 08-18-2012, 06:59 AM   #4
LovesTimone
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My heart and prayers are with you both.

I can not wait to hear about your trip. I hope that you have a super duper magic filled time.
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Old 08-18-2012, 10:43 AM   #5
nesser1981
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Welcome!

My DD, Keira, also wanted to meet the princesses on our trip. And she did, everyone except for Mulan, because we couldn't track her down at Epcot.

It was amazing!

Please, feel to free to start asking questions and browsing other trip reports.
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Old 08-19-2012, 03:48 PM   #6
maroo
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So glad you guys started a pre-trip report!!!



Welcome to the DIS!

I have linked you guys on the Wish Trippers page!
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Old 09-03-2012, 08:45 PM   #7
DelanaAndKyra
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Quote:
Originally Posted by maroo View Post
So glad you guys started a pre-trip report!!!



Welcome to the DIS!

I have linked you guys on the Wish Trippers page!


linked us?
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http://www.disboards.com/showthread....9#post45857749


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Old 09-03-2012, 08:50 PM   #8
blessedmom4
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Quote:
Originally Posted by DelanaAndKyra View Post
linked us?
HI!!! Another heart Mom here. Maroo put a link to your PTR (pre Trip Report) on the front of the Wish Trippers Thread so others could find you. SO EXCITED to read along!! We LOVE Pictures (if you want to post them).
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Old 09-14-2012, 08:16 PM   #9
aym4Him
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I'm in!

Can't wait to follow along as you plan the trip!

Heart hugs,

Amy
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Old 10-06-2012, 11:53 AM   #10
billwendy
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So excited she will get to meet the princesses!!
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Old 10-31-2012, 05:14 AM   #11
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Popped in to say

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Old 11-06-2012, 06:08 PM   #12
angel's momma
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I'm so sorry that Kyra's gone through so much. So happy that she is getting her wish. I hope you have a wonderful trip.
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 11-21-2012, 10:45 PM   #13
angel's momma
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We hope your family has a wonderful Thanksgiving!
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-21-2012, 11:44 PM   #14
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Old 12-23-2012, 08:37 PM   #15
angel's momma
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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