Joey's "Vacation" make a wish

[joeyroo]

I suppose this is a test post...After touring this site I am happy to say I know Im in the right place. Ive been looking for any and all info for MAW/GKTW trippers. I am-Katrina 35= single mom Of Joseph 5, who was born with the terminal and very rare disease called WisKott aldrich Syndrome. It is a primary immune disease that without a full bone marrow or cord blood transplant is usually fatal by age5 (in the extreme rarest form which joey carries). Joe actually gets his illness from my female genetic line, meaning my mom ,myself and my grandmother all are carriers. Joe is the fifth child born in our family with wiscott but only the second to survive thanks to the cord blood transplant he reicieved at 9 mos of age at Duke children's hospital. It has been a long 5 years but I knew the road ahead before joey was even born and I also knew that at the end there would be my beautiful little boy who was special and would have a fulfilling life despite his transplant. I also knew this day would come when we celebrated with make a wish, and never once did I think of the alternative!
So to recap there is me-mom, wish kid-Joe, his 17 year old sister-Scarlett (who is going to school outside of the home and starting college in Va in tahe fall of 2012) and Nanny-my mom, we four are super excited and hoping to make the most of our trip. Joseph's dad has never been involved physically or financially. And I have been unable to work because of Joseph's needs and appointments. So I will need all those great money saving tips!!

my first question- has anyone used the site that offer's disney gift cards for looking at ads...? my emoticon represents my current strep throat, Joey had it last week!

 

[joeyroo]

Not to be a bummer and dwell on sickness but in case you noticed I misspelled Wiskott Aldrich Syndrome in my post. For all those interested Wiskott is spelled with a K not wiscott with a c. Even I misspell it still. I remember the first time I saw this disease in bold print it was bizarre and all too real.This illness was at duke in the ten rarest genetic diseases. I just wanted to correct the typo. Im sure we all have our own story with laughter and tears.boy emoticons really are cool. Hugs to any PBMTU kids at duke out there. Stay strong!

PBMTU-Pediatric Bone Marrow Transplant Unit

 

[Moodyzblu]

Hi and welcome !

I'm Michelle and my Wish kid is Jayden. I'm also a single mom and had to leave work because of Jaydens illness, so I can certainly relate to your circumstances.
Jayden has Tetralogy of Fallot and it took me a LONG while before I could figure out how to pronounce it .. never mind SPELL it ! (It's a serious heart defect)

We're going to Give Kids the World April 4th-10th then we're "popping" on over to POP Century at the Disney resorts for an extended stay.

A few suggestions I have is to link your PTR into your signature .. that way others will find it easier.

I'm looking forward to reading more about your trips and plans ! I'm in the midst of planning dinners and special events NOW and having fun doing it !

 

[joeyroo]

I guess this works by replying to you in my post??? Im still trying to figure this out. Thanks for the support I will have to try to figure out my "signature"
I don't really know how to plan anything... I don't know what I can plan out.... We are going GKTW with make a wish I do want to do some dining in the park for sure. Maybe someone else who has gktw with MAW can let me know about what I can plan.. and do I plan our days at the park??? I ve just been trying really hard to figure out clothes for the trip budgets are totally stretched, but there are places there if we have to wait till then. wardrobes have all been geared towards sweats for the hospitals...
I hope your son Jayden is doing well sounds like our dates close we will prob be april 15-21st (he wants to meet the Fresh beat band in concert at universal fri april 20th...And meet "Kiki"... So that is a whole big question mark. But those are my first choice dates.
-Im interested in all your planning by the way

 

[DMGeurts]

I wish I could answer some of your GKTW and MAW questions, but I really know nothing about how it works. I have no idea what you can plan, or what your trip includes. I know the section that was posted in your other thread should be able to help you with some of your questions.

I just wanted to let you know I am here reading along. (((Hugs))) Hope you're feeling better today.

D~

 

[joeyroo]

School is out today and tomorrow meaning I have to do playing and entertaining to keep Joe busy... Good thing I like transformers. We are finalizing all of paperwork, and insurance info and waiting to confirm our dates. The restaurants and attractions are overwhelming so I guess I t is best to plan an itinerary (sp check) we will have I think 3 days of wdw passes let me semi move to the MAW link to see what results I can get.

 

[Moodyzblu]

School is out today and tomorrow meaning I have to do playing and entertaining to keep Joe busy... Good thing I like transformers. We are finalizing all of paperwork, and insurance info and waiting to confirm our dates. The restaurants and attractions are overwhelming so I guess I t is best to plan an itinerary (sp check) we will have I think 3 days of wdw passes let me semi move to the MAW link to see what results I can get.

Yeah, I think the standard is 3 Disney, 2 Universal and 1 day Sea World. We decided not to do Sea World since we went there a few years ago.

What I did to make my plans was I got out the calendar and figured the first day we would just settle in and enjoy GKTW and then started planning our days. I wanted to break up the Disney days and Universal days .. it's a little overwhelming at first but once you get started you'll figure it out .. if you need help with anything feel free to PM me or just ask in the main MAW thread .. there are lots of great people there with lots of great experience and advice !

 

[joeyroo]

soIm on the boards everyday now. I want to make the most of our trip. Someone wrote about deserving the special treatment for the wish kid because all the family time missed, that is so true. We had our first 2 xmas and thanksgiving , 1st birthday and easter that was Joe's transplant December of 2007 he recieved an all new blood type, Dna and a chance to survive his fatal genetic disorder. Also joey learned to walk at ( about 2) while inpatient for rehab therapy in fall 2009. We were in for 1 1/2 months in a kinda learning to eat boot camp. That was so hard the methods used to try to make children with oral aversions who may have been through chemo or other illness during life's first steps of learning to eat. I was not given any info prior to that treatment..ANY PARENT of an ill child referred to this feeding rehab or anyone interested in this should look this up. But the worst thing is missing out on my son and daughter bonding. And all of her school events. just being together the 3 of us. It's very sad but when joseph left for his treatment Scarlett-my oldest had to live with my ex husband her dad. She could not come along to Duke hospital. Well those were our 2 longest hospital stays. Now we work on things like hearing aids glasses placing a lift in each of Joey's shoe to correct his gait...easy stuff.

Disney is going to make our drems of being together on vacation real!
I just can't believe it. Our MAW volunteer said we will get 4 days for certain. But we are her first family ever and our MAW chapter seems to have a 1 week GKTW standard even for the very most recent disney wishes. Joey's tru wish is to go on vacation with his sister, so time together is most important to us. Joey will also be looking for MICKEY, DORA, TOY STORY, and most of all TRANSFORMERS (universal) and "THE FRESH BEAT BAND" in concert at universal Fri APRIL 20th ( gonna try to work it in with prayer!).
So our 1st pick for dates are april15-21st.
-His sister loves Harry potter does anyone know if GKTW includes Islands of adventure tickets??
We are doing it all on little or no budget so Im here to learn!!!!
Children's hospital of the kings daughters in norfolk Va is a great hospital.
They helped me with gas for the gazillion drives we have made there.

 

[joeyroo]

Here is my beautiful daughter-first try for link

 

[DMGeurts]

Yay!!! I am glad you are getting things worked out... Disney can be very overwhelming and confusing your first time, and probably even more so with the MAW aspect thrown in. There are so many great people here on The Dis who know what they are doing - so I am really glad that your trip is starting to fall together.

D~

 

[Moodyzblu]

That sounds like a great time to go ! We'll be there the week before. I"m almost wishing we had waited a week so my boys can see The Fresh Beat Band .. they really love these guys.
I know we are getting 2 day Universal/IOA tickets .. I also think they're hoppers so you can go from one park to another. We are most looking forward to Harry Potter World !

I'm so glad that you will finally get that family vacation you all dream about !

 

[Corrine 1973]

Hey, saw your PTR listed and came over to check it out. I am a sucker for the Wish PTR's, especially since my family had our Wish trip back in 2009.

My son has Cystic Fibrosis which is also a genetic disease. He is doing real well though all the treatments he does everyday can be very time consuming.

Moodyzblu was right with the GKTW tickets. You will get 3 park hoppers for Disney, 2 park hoppers for US, and 1 ticket for SeaWorld. You will also find out during orintation that they offer other tickets that you need to ask about. One of the extra free tickets they offered when we went were for the waterpark at SeaWorld. You mignt be able to call GKTW shortly before your trip to see what other tickets are available.

I am so glad that your son recieved the transplant he needed and can't wait to hear more about your wish trip.

FYI- At the bottome of each post you will see four icons to the right. Press the Quote button to to put there quote in your post, press the " icon if you want to quote several people at one time.
To post pictures it is easier to put your pictures on a site like photobucket and than copy and paste the IMG code here.

 

[cogero]

Joining in. So glad Joey is getting his wish.

 

[joeyroo]

I feel so much better to know that we got into fun here!! Thankyou everyone I m working on my Disboard skills... Finally let my wish volunteer know we would need help with all things needed to travel it was tough but had been worrying me alot. Im going to trust and have faith. I think all I have bought in five years is hospital sweats. And its been five years since a haircut and color... They actually have a pro stylist at the duke transplant unit who comes once a month for the parents!!!! So his transplant was my last cut LOL

Still waiting for exact dates!

 

[joeyroo]

I feel so much better to know that we got into fun here!! Thankyou everyone I m working on my Disboard skills... Finally let my wish volunteer know we would need help with all things needed to travel it was tough but had been worrying me alot. Im going to trust and have faith. I think all I have bought in five years is hospital sweats. And its been five years since a haircut and color... They actually have a pro stylist at the duke transplant unit who comes once a month for the parents!!!! So his transplant was my last cut LOL

Still waiting for exact dates!

 

[joeyroo]

celebrating 5 years!!!! Each one is a miracle
Also sending my 17 teen year old to this site to figure out the tech-e stuff lol
love to all

 

[Corrine 1973]

celebrating 5 years!!!! Each one is a miracle
Also sending my 17 teen year old to this site to figure out the tech-e stuff lol
love to all

Happy Birthday Joey!!!!!!

​

 

[Moodyzblu]

Happy Birthday Joey !!

 

[nesser1981]

Also joining in, Happy Birthday Joey!

My wish child is my 6 year old DD who had beat cancer twice now.

We leave on February 27th for her Make a Wish trip to GKTW.

What questions do you have?

You can look at my PTR (link in my siggy) and see what we've got planned.

 

[Blyssfull]

just found your trip report and caught up. Hope you guys have gotten some more information from your wish granters. Here's a good place to start... They have lots of information for Wish Trippers here...

http://www.disboards.com/showthread.php?t=2807833