Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FIVE!!

[maroo]

I just need to rant a little. I feel like we just can't catch a break. My husbands truck died a few months ago so he's been carpooling to work. Then today, our 15 passenger can blew a head gasket. No telling how much money we'll have to sink into it to get it running. To top it off, Ava is running 104 fever, so I think we may have to hitch a ride to the ER. Thankfully, a friend of mine brought two of the kid to their baseball practice today and hopefully I can find baseball rides for the others until we get this fixed.

Oh no! How is she doing now? Did you guys find a ride? I really hope things are looking up for you guys now!

Can someone please add us to the trip for 2013? We are headed to Disneyland in July. We still have some time to go but we are beginning to countdown!!

I think I finally even learned how to add the PTR in my signature!!!

Mommy, I want to see Carsland, Tycen's MAW PTR

Thanks so much!! We are excited to share this adventure with others who have experienced it.

Kristi

to the DIS! I will be glad to add ya!

AHHH!!!! We just got a call from the wish manager and she said that GKTW is BOOKED!!! So we will not be able to stay there!! I am kinda upset. I was SO EXCITED to stay there! I know we can still visit and stuff but its not the same has anyone NOT stayed at GKTW and still had a great time?

We had a blast on our trip even though we were staying onsite! We did GKTW on the first day. We never did make it back - but that is because Lauren got sick on her trip - it is totally doable to go to GKTW for the activities and a meal or two and stay onsite for the rest of the time! You will be able to use the Disney buses to get around and I think you will really like it!

No clue where we are staying. She sent an email to my hubby saying that we couldnt stay so he called her and she said that she was booking flights and the hotel today. So I should know later tonight. We could alter the dates but it would be MUCH later in the year and we dont want to wait that long. With Jakes disease I have no idea how he is going to be in 6 months or so. We want to go now while he is stable and good and can have a good time. I am excited that we will be right on the park property so we can take breaks if needed. I am just sad to miss the GKTW stuff. I know we can still go there...but its not as easy as it would be if we stayed there.

Let us know where you guys are going to end up staying!

Hi everyone! This has been a busy week! Kara did great taking her first dose of her oral chemo for her first cycle. I did recieve a punch in the eye on the last night when waking her up. She is a fiesty one! We get a break until March 20th - then we go back to Hopkins for IV treatment and this will be the first time her port is accessed. A little nervous about that!

I hope everyone is doing well and that their planning is going good! Im excited to read and can't wait to see more pictures and hear more plans!

I also wanted ask some advice about the wish process. I was wondering how long did it take for some of your children's wishes to be offically granted?

This varies greatly by chapter - it can take weeks, months or even years - depends on funding, how many wishes they need to grant, how many children are wishing for Disney, and how the child is doing. It also depends some on how the doctor fills out the paperwork and how fast they return it.

Each chapter of Make a Wish is different - and some families on here are actually guests of a different wish granting organization - so going by what is on here can be problematic -

Hopefully you guys will find out quickly but still with some time to plan.

The process goes so FAST - (like kids growing up) - once it is over I wished it would start over again because the planning process was so much of the fun!

Is there anyone here, whose child has Evans Syndrome? I am just looking to connect with someone that has a child with the same illness my daughter has. Her illness is an Autoimmune disorder, her white cells & red cells & retic is affected, she is not having trouble w/her platlets.
I have found other families affected with the platlets only, but I have yet to find anyone with my DD's type of illness.

If you are out there, give me a shout, I would like to talk to someone who understands.

I don't think I know of any children on here with that particular disorder?? I do know we have had some kiddos with autoimmune disorders - because I have seen some talk about getting IVIG and such - but I am not sure about Evans Syndrome. Does it go by any other name?

Question about fireworks...where can we watch them and still be a good distance away? My son, Nate has had seizures from fireworks, so we have to be careful. If we're far enough away and constantly distract him, he's ok.

Kristy

Hmm... is it the sound of fireworks that sets off the seizure or the sight of them? Or is there really a way to know?

Make SURE you are not "under" the fireworks - like in Fantasyland - it is LOUD and shakes the buildings in some spots.

I think I would go towards the end of main street, maybe? Maybe by the train station? And stay near a building where you can duck in there if you need to get him out of there?

I will say that Disney fireworks are not particularly loud - they really try to make them kid friendly and they pop sort of quietly - but they are still large and definitely look like fireworks!

I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!

to the DIS! You are in the right place to learn lots about planning!

If anyone can get to the parks early before rope drop, some special things might happen!
We went to Animal Kingdom early, & was at the section Camp Mickey & Minnie & Brooklin was picked to open up Camp Mickey & Minnie, she raised the Camp Flag, had a private M&G w/ Chip & Dale & was first to see Mickey.
She also had VIP seating at the Lion King Show.
We went to Magic Kingdom early, was the first ones standing at a turnstile, (not the one for Breakfast Reservations & Tours) & We were picked to be the Opening Family of the Day, We got to get in the park early with a CM, she took us around took pictures & when the train came, we were introduced to the crowd along with Mickey & Friends & opened the park.

This was a great trip, Brooklin also went back to Give Kids The World to see her star.

I am so excited that you guys got to be Family of the Day!!

I was part of a park opening once and it was simply amazing!!!!

Was Barbara your CM that took pictures and such? I LOVED her!!!!

 

[taliasmom]

Hanging out with my Talia in the E.R., hopefully its nothing, vomiting some blood, but could be anything. She's in good spirits though. I wish the 20th would get here for this MAW interview, I need some anxiety relief! All the cash I had saved for the trip (along with the bill and rent money) was sucked out of the bank because of Hubby's old debt today too, definitely the fire hydrant today. Pretty sure I must have been a mass murderer in a past life.

 

[Lilfoot93]

I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!

Welcome!! I am so glad that Hayden gets his wish!

Hanging out with my Talia in the E.R., hopefully its nothing, vomiting some blood, but could be anything. She's in good spirits though. I wish the 20th would get here for this MAW interview, I need some anxiety relief! All the cash I had saved for the trip (along with the bill and rent money) was sucked out of the bank because of Hubby's old debt today too, definitely the fire hydrant today. Pretty sure I must have been a mass murderer in a past life.

Praying for Talia.

Jackie

 

[taliasmom]

Praying for Talia.

Jackie

Me too Jackie, they don't know either, so admitting her now. Hubby is convinced its nothing and we are wasting time, but why gamble.

 

[Lilfoot93]

Me too Jackie, they don't know either, so admitting her now. Hubby is convinced its nothing and we are wasting time, but why gamble.

Glad they are admitting her to find out what is going on. It is better to have her checked out now and finding nothing wrong with her than waiting until it is too late to do something!

Jackie

 

[angel's momma]

KWATKIN3 Sorry Hayden has been through so much. Glad he is getting a wish.

Sounds like you had an amazing trip 2012bella13.

Charolott - So sorry you had such a bad day Praying for Talia.

 

[taliasmom]

Praying for Talia.

Jackie

Me too Jackie, they don't know either, so admitting her now. Hubby is convinced its nothing and we are wasting time, but why. gamble.

 

[taliasmom]

Me too Jackie, they don't know either, so admitting her now. Hubby is convinced its nothing and we are wasting time, but why. gamble.

Sorry, phone issue

 

[Cheshire Figment]

If your child is small enough a Wagon could work out well too...

Nicole

Disney (and Universal) do not allow anything that is pulled behind you. If you attempt to bring a wagon with you it will not be allowed into the Park.

 

[Jakentysmom]

Hanging out with my Talia in the E.R., hopefully its nothing, vomiting some blood, but could be anything. She's in good spirits though. I wish the 20th would get here for this MAW interview, I need some anxiety relief! All the cash I had saved for the trip (along with the bill and rent money) was sucked out of the bank because of Hubby's old debt today too, definitely the fire hydrant today. Pretty sure I must have been a mass murderer in a past life.

Oh no!! I hope everything is ok. So sorry about the money. I totally understand

 

[NEmel]

Ok, so finally got a few minutes to add some pictures.

These are the shirts I made for pirate night. I may add some fireworks, since that was Carter's main wish. I also added some more pics on his PTR.

 

[angel's momma]

Love the shirts Melissa. Fireworks would be fantastic!

 

[LittleEsmom]

Our wish granter had to postpone our meeting till next weekend to get our trip stuff....I'm on pins and needles! I hope our package gets here before we leave! Everything is packed but some odds and ends

 

[LittleEsmom]

Ok, so finally got a few minutes to add some pictures.

These are the shirts I made for pirate night. I may add some fireworks, since that was Carter's main wish. I also added some more pics on his PTR.

Super Cute!!!

 

[angel's momma]

Sorry about the delay Dana. I'm antsy as it is that we have to wait until 2 weeks before to get our details - I like to be able to plan things out. Yay for having most of your packing done

 

[2012bella13]

Oh no! How is she doing now? Did you guys find a ride? I really hope things are looking up for you guys now!



to the DIS! I will be glad to add ya!



We had a blast on our trip even though we were staying onsite! We did GKTW on the first day. We never did make it back - but that is because Lauren got sick on her trip - it is totally doable to go to GKTW for the activities and a meal or two and stay onsite for the rest of the time! You will be able to use the Disney buses to get around and I think you will really like it!



Let us know where you guys are going to end up staying!



This varies greatly by chapter - it can take weeks, months or even years - depends on funding, how many wishes they need to grant, how many children are wishing for Disney, and how the child is doing. It also depends some on how the doctor fills out the paperwork and how fast they return it.

Each chapter of Make a Wish is different - and some families on here are actually guests of a different wish granting organization - so going by what is on here can be problematic -

Hopefully you guys will find out quickly but still with some time to plan.

The process goes so FAST - (like kids growing up) - once it is over I wished it would start over again because the planning process was so much of the fun!



I don't think I know of any children on here with that particular disorder?? I do know we have had some kiddos with autoimmune disorders - because I have seen some talk about getting IVIG and such - but I am not sure about Evans Syndrome. Does it go by any other name?



Hmm... is it the sound of fireworks that sets off the seizure or the sight of them? Or is there really a way to know?

Make SURE you are not "under" the fireworks - like in Fantasyland - it is LOUD and shakes the buildings in some spots.

I think I would go towards the end of main street, maybe? Maybe by the train station? And stay near a building where you can duck in there if you need to get him out of there?

I will say that Disney fireworks are not particularly loud - they really try to make them kid friendly and they pop sort of quietly - but they are still large and definitely look like fireworks!



to the DIS! You are in the right place to learn lots about planning!



I am so excited that you guys got to be Family of the Day!!

I was part of a park opening once and it was simply amazing!!!!

Was Barbara your CM that took pictures and such? I LOVED her!!!!

YES!!! Barbara was the CM that took pictures, she is awesome!! I loved every minute, we had seen her on Wed. dancing in the parade, she just makes you happy & puts a smile on your face. This was such an awesome trip, I wished we had more time, we got to go back to GKTW one evening, Brooklin rode the merry-go-round 4 times, she loved it.

Brooklin's illness is very rare, it is an Autoimmune Hemolytic Anemia, (Evans Syndrome) you can have it in differant ways, the majority is with the platlets not being normal, but Brook's is her white cell, red cell & retick, her body will fight off a virus but her body does not realize that the virus is gone & then it turns on its self. When Brook was hospitalized, she had to have 3 of those IVIG's, & was told she might have to have a blood transfusion but they could not find any compatible, her liver was also affected by the illness & we were afraid that she might have to have a liver transplant, but with Faith, Prayers & Meds, she was able to be stablized. She has been stable for 2yrs now & off meds for 6 months, & we took a trip back to Disney to celebrate her 5th birthday & good health.

All of the families here are in my prayers, God Bless!

 

[Jakentysmom]

Ok, so finally got a few minutes to add some pictures.

These are the shirts I made for pirate night. I may add some fireworks, since that was Carter's main wish. I also added some more pics on his PTR.

Those shirts are so cute!! I am going to go to his PTR and see the rest!

Our wish granter had to postpone our meeting till next weekend to get our trip stuff....I'm on pins and needles! I hope our package gets here before we leave! Everything is packed but some odds and ends

Sorry it got postponed!! I am so excited for you guys to get everything!!!

 

[ajjwmaw]

Hi! I'm Julie and I'm new on the board. My daughter Jenna was dx with leukemia (ALL) in August 2011. She's undergoing treatment until February 2014. I wrote a bit about her story in our PTR. She's such an amazing kid! We were going to wait until she was off treatment to let her make her Wish. But, she started begging us to take her to DW every day, so we decided that the time must be right.

Her doctor submitted the paperwork to MAW a few weeks ago and they moved fast. We had a meeting with her Wish Granters last Thursday and the next day they submitted her wish to go to Disney World. We are hoping to go in April, but know that it would be a pretty quick turn around and we're not sure how busy GKTW is that time of year. Hopefully we will hear back from MAW soon with dates! I can't wait to start planning our trip!

Check out our PTR . I look forward to getting to know everyone on the board!

 

[Jakentysmom]

Hi! I'm Julie and I'm new on the board. My daughter Jenna was dx with leukemia (ALL) in August 2011. She's undergoing treatment until February 2014. I wrote a bit about her story in our PTR. She's such an amazing kid! We were going to wait until she was off treatment to let her make her Wish. But, she started begging us to take her to DW every day, so we decided that the time must be right.

Her doctor submitted the paperwork to MAW a few weeks ago and they moved fast. We had a meeting with her Wish Granters last Thursday and the next day they submitted her wish to go to Disney World. We are hoping to go in April, but know that it would be a pretty quick turn around and we're not sure how busy GKTW is that time of year. Hopefully we will hear back from MAW soon with dates! I can't wait to start planning our trip!

Check out our PTR . I look forward to getting to know everyone on the board!

we are going in April!! So hopefully you get to go, then!

 

[JWCJ]

Hanging out with my Talia in the E.R., hopefully its nothing, vomiting some blood, but could be anything. She's in good spirits though. I wish the 20th would get here for this MAW interview, I need some anxiety relief! All the cash I had saved for the trip (along with the bill and rent money) was sucked out of the bank because of Hubby's old debt today too, definitely the fire hydrant today. Pretty sure I must have been a mass murderer in a past life.

Hope everything is going okay

Ok, so finally got a few minutes to add some pictures.

These are the shirts I made for pirate night. I may add some fireworks, since that was Carter's main wish. I also added some more pics on his PTR.

Fantastic job! I love those shirts!

Our wish granter had to postpone our meeting till next weekend to get our trip stuff....I'm on pins and needles! I hope our package gets here before we leave! Everything is packed but some odds and ends

SO CLOSE! EEEEE!

Hi! I'm Julie and I'm new on the board. My daughter Jenna was dx with leukemia (ALL) in August 2011. She's undergoing treatment until February 2014. I wrote a bit about her story in our PTR. She's such an amazing kid! We were going to wait until she was off treatment to let her make her Wish. But, she started begging us to take her to DW every day, so we decided that the time must be right.

Her doctor submitted the paperwork to MAW a few weeks ago and they moved fast. We had a meeting with her Wish Granters last Thursday and the next day they submitted her wish to go to Disney World. We are hoping to go in April, but know that it would be a pretty quick turn around and we're not sure how busy GKTW is that time of year. Hopefully we will hear back from MAW soon with dates! I can't wait to start planning our trip!

Check out our PTR . I look forward to getting to know everyone on the board!

Hi! That's awesome that MAW is moving so fast! We're heading to GKTW end of April/beginning of May. We're going while Ja is still on treatment too (she's done Oct '14) - we're in Canada, so I have no idea when we would have the opportunity to travel down to the US, and I really wanted my girls to experience Disney magic at younger ages.