Kyra's Make A Wish PTR - The DIS Discussion Forums

DelanaAndKyra · 08-17-2012, 08:51 PM

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!

carebearkidney · 08-17-2012, 11:43 PM

Welcome to you and your little princess Kyra!

Looking forward to reading about her wish adventures as they unfold.

Lilfoot93 · 08-18-2012, 01:22 AM

Welcome! I'm glad that sweet Kyra is getting her wish! We too are going next May for Trevor's wish trip.

Jackie

LovesTimone · 08-18-2012, 06:59 AM

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.

nesser1981 · 08-18-2012, 10:43 AM

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.

maroo · 08-19-2012, 03:48 PM

So glad you guys started a pre-trip report!!!

Welcome to the DIS!

I have linked you guys on the Wish Trippers page!

DelanaAndKyra · 09-03-2012, 08:45 PM

Quote:

Originally Posted by maroo

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?

blessedmom4 · 09-03-2012, 08:50 PM

Quote:

Originally Posted by DelanaAndKyra

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).

aym4Him · 09-14-2012, 08:16 PM

I'm in!

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

Heart hugs,

Amy

billwendy · 10-06-2012, 11:53 AM

So excited she will get to meet the princesses!!

blessedmom4 · 10-31-2012, 05:14 AM

Popped in to say

angel's momma · 11-06-2012, 06:08 PM

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.

angel's momma · 11-21-2012, 10:45 PM

We hope your family has a wonderful Thanksgiving!

blessedmom4 · 11-21-2012, 11:44 PM

angel's momma · 12-23-2012, 08:37 PM

08-17-2012, 08:51 PM	#1
DelanaAndKyra Mouseketeer Join Date: Aug 2012 Posts: 75	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

08-17-2012, 11:43 PM	#2
carebearkidney Mouseketeer Join Date: Jan 2012 Location: North Atlanta Posts: 325	Welcome to you and your little princess Kyra! Looking forward to reading about her wish adventures as they unfold. __________________ Karen (the momma) Ian (the daddy) William - 6 (the Cars boy) Matthew - 4 (the all out Disney NUT) Our MAW PTR To Kidney - and Beyond! Our kidney-versary trip - celebrating one year anniversary of kidney transplant! kidney-versary trip 2011 Kidney-versary trip 2011 MAW trip Feb 17 - 23

08-18-2012, 01:22 AM	#3
Lilfoot93 DIS Veteran Join Date: May 2012 Posts: 660	Welcome! I'm glad that sweet Kyra is getting her wish! We too are going next May for Trevor's wish trip. Jackie __________________ Trevor's Star Wars Make A Wish Trip Trevor DS 7 (wish kiddo) Allie DD 4 Kara DD 4

08-18-2012, 10:43 AM	#5
nesser1981 DIS Veteran Join Date: Sep 2011 Location: Michigan Posts: 567	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. __________________ Proud Mama to Wish Child, Cancer Survivor Keira DD 7 and her awesome little brother Cooper DS 4 Keira's MAW PTR Keira's MAW TR Epcot 1997, MK 1999, Tokyo Disney 2001, Disney Sea 2002, Animal Kingdom 2002, MK 2010, GKTW MAW 2012

08-19-2012, 03:48 PM	#6
maroo DIS Veteran Join Date: Aug 2008 Location: MS Posts: 8,049	So glad you guys started a pre-trip report!!! Welcome to the DIS! I have linked you guys on the Wish Trippers page! __________________ The ABC's...a Trip Report!Make a Wish Sends Lauren to Disney - A Rainbow TR!Wish Trippers UNITE! A thread for wish families.♥ A Wish Granted - One Magical Morning ♥ Matty and the Gingerbread Men!Video of GKTW on the Today Show!! ~ ~

Sponsored Links
The DIS Register to remove Join Date: 1997 Location: Orlando, FL Posts: 1,000,000

08-18-2012, 06:59 AM	#4
LovesTimone DIS Veteran Join Date: Apr 2009 Location: Northern GA. Posts: 927	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.

09-14-2012, 08:16 PM	#9
aym4Him Mouseketeer Join Date: May 2012 Location: Texas Posts: 195	I'm in! Can't wait to follow along as you plan the trip! Heart hugs, Amy __________________ Wish Trippers: Dillon (DH), Amy (me), and Ethan (Wish Kid) Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

10-06-2012, 11:53 AM	#10
billwendy DIS Veteran Join Date: Aug 1999 Location: essington, PA Posts: 4,932	So excited she will get to meet the princesses!! __________________ (DH) (Me)(Zoey - our beloved furbaby - Miss you Zozo!) and (Tigger - our newest furbaby)

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. Join Date: Apr 2010 Location: Charlotte, NC Posts: 6,689	Popped in to say __________________ OOPS!... She did it again! Lightning CAN strike Twice! In Progress Lisa IS FAMOUS! Make A Wish Dream COME TRUE! Read Lisa's Make A Wish article. Read about Rachel playing at the House of Blues~ORLANDO.

11-06-2012, 06:08 PM	#12
angel's momma DIS Veteran Join Date: Jan 2004 Location: Central Illinois Posts: 4,050	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. __________________ 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

11-21-2012, 10:45 PM	#13
angel's momma DIS Veteran Join Date: Jan 2004 Location: Central Illinois Posts: 4,050	We hope your family has a wonderful Thanksgiving! __________________ 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

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. Join Date: Apr 2010 Location: Charlotte, NC Posts: 6,689	__________________ OOPS!... She did it again! Lightning CAN strike Twice! In Progress Lisa IS FAMOUS! Make A Wish Dream COME TRUE! Read Lisa's Make A Wish article. Read about Rachel playing at the House of Blues~ORLANDO.

12-23-2012, 08:37 PM	#15
angel's momma DIS Veteran Join Date: Jan 2004 Location: Central Illinois Posts: 4,050	__________________ 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

Thread Tools
Show Printable Version Email this Page
Display Modes	Rate This Thread
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode	Rate This Thread: