Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[maroo]

I am not a Mom. Not a wish kid. Never even been married - and MY emotions are all over the place on that one. All of those wish kids.

Nevermind. I can't even go there.



But I am very happy for her and very proud that GKTW is providing it for her.

 

[Savannah's Mami]

I am not a Mom. Not a wish kid. Never even been married - and MY emotions are all over the place on that one. All of those wish kids.

Nevermind. I can't even go there.



But I am very happy for her and very proud that GKTW is providing it for her.

To see a wedding on the grounds of a former wish child while you are there.....I just kept thinking of all of the hope they will be providing...and that is a precious gift.

 

[maroo]

To see a wedding on the grounds of a former wish child while you are there.....I just kept thinking of all of the hope they will be providing...and that is a precious gift.

Very, very true.

Hope indeed.

 

[motherof4greatkids]

Hi i just wanted to know if any one knows what world pass port is i read it on a few other sites about people getting them

 

[kdzbear]

Hi what is world passport and how do you get one?

Hi i just wanted to know if any one knows what world pass port is i read it on a few other sites about people getting them

Here is the link: http://www.disboards.com/showthread.php?t=1509917

You will need three pieces of cardstock for each passport. You print them front and back. They are little and handheld. There is a spot for a passport stamp from each country in Epcot. There is also a place for the castmember to write something in the native language of the country you are visiting. You can purchase similar ones in the parks that come with stickers, but the designers on this thread have created amazing ones. Let me know if you can't download the link and you need me to email it to you!

 

[stitchfamily]

I am not totaly sure if this is right but her goes!

Hello everyone I just wanted to introduce you to our “Wish” family. Hi… my name is Sandy AKA mommy, daddy is Adam. We have three beautiful, wonderful, super smart kids. First there is Christian Renee’ (our Wish kid this time around) she is 17 and a junior in high school more about her in a moment… Then there is Laura she is 15 and “the house boss” God bless this angel she keeps everything running when mom and dad are busy with a sick kid (which is a lot it seems). We take special care to tell her every day how precious she is. Lastly there is Brian Adam (AKA Stitch, I really think Disney studied this kid for that character LOL!) He is 13 and a past MAW kid himself. He was born at 29 weeks, weighing in at 2lb. 10oz. he has congenital encephalitis (a TRUE miracle baby) Brian is now completely ambulatory (walks and talks normal) he just catches every single bug he is exposed too! He is also photosensitive meaning allergic to the sun, so very little out side time for us.

Christian’s story is quite unusual… when she was 14 she was sent to the emergency room with a bloody nose that was so bad it had backed up into her tear ducts and bleeding from her eyes and it would not stop. (Talk about a freaked out Mom and Dad)! Well, after a bunch of pokes and prods the doctors tell us she has a vitamin K deficiency. She was given supplements and was fine for a while then it would start all over again… Fast-forward 2 years she is a very active JrROTC cadet doing very well HAPPY, and smart (I like the word sharp) beginning of 10th grade she started to change, she was tired all the time, not eating (if she did she would get sick and throw up) by Christmas she was down less than 100lbs. THIS IS WHEN WE ALMOST LOST HER… I walked into the family room to see her sitting in the middle of the floor crying… she had forgotten how to tie her shoes. Knowing there was something really wrong we took her to the ER, they immediately started working on her. Doctor after doctor in and out FINALY they told us she was having a “thyroid storm” probably had a heart attack, and were pretty sure she had full blown Graves Disease. In retrospect that was her problem all along she was just misdiagnosed for many years.

My middle child Laura (the Angel) loves her sister and brother more than anything in the world. (I am truly blessed). She wanted to do something to help, so she started a campaign to nominate her sister for MAW in February this year, well we got the call the Christian was approved and met with the Wish granters a few weeks ago!

Christian wished to spend her 18th birthday AT Disney World! Her Birthday is May 10th so I know it’s going to be hot… The wish granters said they didn’t see any reason that could not be done but did ask for additional dates “just in case”. The also wanted to know if there was anything special she wanted to “do” there… Christian is an artist at soul so, she said meeting an imaginer would be awesome.

This trip is going to take a lot of special planning having Christian who CAN NOT control her own body temperature due to the progression of her disease and Brian being photosensitive so we can use all the advice y’all can give.

 

[thatkid]

hi stitchfamily!
I am photosenstitive too. I'm going on my wish trip in 2 weeks, so i'll have lots of tips when i come back, i'm sure! We live in a pretty cloudy spot, and i still can't go outside much, so i'm not sure how being in the florida sun will be for me. I'm also close to the same age as your wish child, I just turned 18, so i'm glad to know im not the only "old" wish child that picks disneyworld
the people on these boards are awesome!

 

[yinyanggirls]

Welcome! I can imagine how scary it was to see Christian in that state. Thank goodness they eventually diagnosed her! I have never met anyone (that I'm aware of) that is photosensitive, so could you tell me a little more about the limitations? Does sunscreen help? Hats and long sleeves? Umbrella? Or does even the littlest amount cause problems?
Off the top of my head, I was thinking you could do lots of shows during the day and save the rides for after dusk. Epcot seems to be mostly indoors as does US. (I've not been yet, so not completely sure). I'm also thinking that you could see what the rides are like by searching youtube.
It sounds like you all are a wonderful family and "meant to be" together. I hope this board can help you plan an amazing trip!

 

[stitchfamily]

Welcome! I can imagine how scary it was to see Christian in that state. Thank goodness they eventually diagnosed her! I have never met anyone (that I'm aware of) that is photosensitive, so could you tell me a little more about the limitations? Does sunscreen help? Hats and long sleeves? Umbrella? Or does even the littlest amount cause problems?
Off the top of my head, I was thinking you could do lots of shows during the day and save the rides for after dusk. Epcot seems to be mostly indoors as does US. (I've not been yet, so not completely sure). I'm also thinking that you could see what the rides are like by searching youtube.
It sounds like you all are a wonderful family and "meant to be" together. I hope this board can help you plan an amazing trip!

Well for us (it can vary person to person) Photosensitive means... sunscreen LOTS and LOTS of sunscreen Neutrogena SPF100+ for face and hands and then Hawaiian tropic makes a good ozone protection that is SPF 80 for everything else even under clothes... we also use what is called "endurance ware" (it's the material that cyclist use in competitions to keep them cool it also blocks out UVA/UVB rays) we really don't worry much about legs its REAR that they burn, beyond that hats and sunglasses are a must.

Even will all this protection we took Brian to a beach in March, we were out LESS THAN three hours early in the day, and totally protected, he ended up in the ER with 3rd degree burns...

Heat in its self makes BOTH Christian and Brian melt... poor things! I know we are going to have to a bulk of our "touring" in the evenings. We are also looking into wheelchairs with umbrellas for rental... They can be outside just VERY limited and sunscreen has to be reapplied often... I am working on getting wetsuits for the kids so that they can do SOME water activities.

SO MUCH to think about...and I am just starting...

 

[pipersmom]

So glad you all finally got a diagnosis, and ! We're in early planning stages as well I can only imagine what you must go through trying to protect your kids and admire you for dealing so well with it. Hopefully you'll be able to find a company willing to give you the wetsuits for low or no cost, I know they can be pricey. How cool would it be for Christian to meet an Imagineer?!? Looking forward to following along

 

[maroo]

I am not totaly sure if this is right but her goes!

Hello everyone I just wanted to introduce you to our “Wish” family. Hi… my name is Sandy AKA mommy, daddy is Adam. We have three beautiful, wonderful, super smart kids. First there is Christian Renee’ (our Wish kid this time around) she is 17 and a junior in high school more about her in a moment… Then there is Laura she is 15 and “the house boss” God bless this angel she keeps everything running when mom and dad are busy with a sick kid (which is a lot it seems). We take special care to tell her every day how precious she is. Lastly there is Brian Adam (AKA Stitch, I really think Disney studied this kid for that character LOL!) He is 13 and a past MAW kid himself. He was born at 29 weeks, weighing in at 2lb. 10oz. he has congenital encephalitis (a TRUE miracle baby) Brian is now completely ambulatory (walks and talks normal) he just catches every single bug he is exposed too! He is also photosensitive meaning allergic to the sun, so very little out side time for us.

Christian’s story is quite unusual… when she was 14 she was sent to the emergency room with a bloody nose that was so bad it had backed up into her tear ducts and bleeding from her eyes and it would not stop. (Talk about a freaked out Mom and Dad)! Well, after a bunch of pokes and prods the doctors tell us she has a vitamin K deficiency. She was given supplements and was fine for a while then it would start all over again… Fast-forward 2 years she is a very active JrROTC cadet doing very well HAPPY, and smart (I like the word sharp) beginning of 10th grade she started to change, she was tired all the time, not eating (if she did she would get sick and throw up) by Christmas she was down less than 100lbs. THIS IS WHEN WE ALMOST LOST HER… I walked into the family room to see her sitting in the middle of the floor crying… she had forgotten how to tie her shoes. Knowing there was something really wrong we took her to the ER, they immediately started working on her. Doctor after doctor in and out FINALY they told us she was having a “thyroid storm” probably had a heart attack, and were pretty sure she had full blown Graves Disease. In retrospect that was her problem all along she was just misdiagnosed for many years.

My middle child Laura (the Angel) loves her sister and brother more than anything in the world. (I am truly blessed). She wanted to do something to help, so she started a campaign to nominate her sister for MAW in February this year, well we got the call the Christian was approved and met with the Wish granters a few weeks ago!

Christian wished to spend her 18th birthday AT Disney World! Her Birthday is May 10th so I know it’s going to be hot… The wish granters said they didn’t see any reason that could not be done but did ask for additional dates “just in case”. The also wanted to know if there was anything special she wanted to “do” there… Christian is an artist at soul so, she said meeting an imaginer would be awesome.

This trip is going to take a lot of special planning having Christian who CAN NOT control her own body temperature due to the progression of her disease and Brian being photosensitive so we can use all the advice y’all can give.

to the Wish Trippers Thread!

We are so glad to have you. Sounds like you guys have been through lots.

Meeting an Imagineer would be AWESOME! How do you spell that????

I have no idea about photosensitivity - There may be some hints on the DISabilities board - they have links to all sorts of information over there. Sue is the moderator of that board and is a fountain of knowledge.

Welcome to the thread. There is also a lot of information on the first 2 posts of this thread - how to start a pre-trip report and how to post pictures (if you want).

But welcome...we are glad you are here!

 

[motherof4greatkids]

Here is the link: http://www.disboards.com/showthread.php?t=1509917

You will need three pieces of cardstock for each passport. You print them front and back. They are little and handheld. There is a spot for a passport stamp from each country in Epcot. There is also a place for the castmember to write something in the native language of the country you are visiting. You can purchase similar ones in the parks that come with stickers, but the designers on this thread have created amazing ones. Let me know if you can't download the link and you need me to email it to you!

Hi for some reason i cant download it can you email it please and thank you

 

[kellyw8863]

Okay, I have a question for you all. Anyone ever bring non-immediate family members along on a Wish Trip? We have asked my husband's parents to come along with us in the event that this really does happen in April. His father has been dabbling in photography (has a nice camera, taking courses, winning contests, etc.) so we were hoping that he would be our photographer for the week. Also, they are seasoned travelers, and I know that they would have a great time watching their grandchildren. And I'm also hoping they could take Gabe at times so we could have some time with just the girls.

BUT...Now I'm having second thoughts. I truly want this week to be for the girls, and Ali especially. We have seen so many regressions in just the past six months, and we have no idea what the next year will bring. Both have already given up so much and I see this as our opportunity to make the past four years "right," if that makes sense. I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Any thoughts? Success stories? Nightmares?

Kelly

 

[maroo]

Okay, I have a question for you all. Anyone ever bring non-immediate family members along on a Wish Trip? We have asked my husband's parents to come along with us in the event that this really does happen in April. His father has been dabbling in photography (has a nice camera, taking courses, winning contests, etc.) so we were hoping that he would be our photographer for the week. Also, they are seasoned travelers, and I know that they would have a great time watching their grandchildren. And I'm also hoping they could take Gabe at times so we could have some time with just the girls.

BUT...Now I'm having second thoughts. I truly want this week to be for the girls, and Ali especially. We have seen so many regressions in just the past six months, and we have no idea what the next year will bring. Both have already given up so much and I see this as our opportunity to make the past four years "right," if that makes sense. I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Any thoughts? Success stories? Nightmares?

Kelly

Depending on the needs of the family, MAW has paid for an adult to go before. I was that adult on Lauren's trip. But I think it has to be pretty extreme circumstances (in Lauren's case 3 of their family members have significant health issues, including her Dad who is a brittle diabetic...they never travel without another adult).

There have also been trips where they have brought extended family on their own dime.

Sometimes they have stayed on Disney property or another hotel and on at least two occasions they were told they could stay at GKTW with the family (assuming there was room in the villa without adding an extra villa). They would have to pay for their own tickets and food, though.

As to the dynamics...well...only you will know that. I would trust your gut. One option would be to have a major "define the trip" talk with the extra people going. For example - in my case, it was well defined what my role was...It was a selfless trip for me - it was not about what I wanted to do or not do - this was about what to do for Lauren to make their trip the best it could be. And if they have that thought process and let your family call all of the shots - and you will feel ok doing that - than it can be a wonderful experience. Having the extra adult on Lauren's trip really made the nightmare of her getting so sick on her trip better - because I could stay with Lauren and let her brother keep going and have both of is parents with him.

As far as nightmare stories...Mya (the younger Mya - we have 2) - they brought an extended family member and I think they had reservations before they went, but decided the risk was worth the extra person...and they had a nightmare moment. It was awful just reading about.

So...I guess my 10 cents is to trust your gut and make sure the role is well defined for all of you guys.

 

[Savannah's Mami]

Okay, I have a question for you all. Anyone ever bring non-immediate family members along on a Wish Trip? We have asked my husband's parents to come along with us in the event that this really does happen in April. His father has been dabbling in photography (has a nice camera, taking courses, winning contests, etc.) so we were hoping that he would be our photographer for the week. Also, they are seasoned travelers, and I know that they would have a great time watching their grandchildren. And I'm also hoping they could take Gabe at times so we could have some time with just the girls.

BUT...Now I'm having second thoughts. I truly want this week to be for the girls, and Ali especially. We have seen so many regressions in just the past six months, and we have no idea what the next year will bring. Both have already given up so much and I see this as our opportunity to make the past four years "right," if that makes sense. I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Any thoughts? Success stories? Nightmares?

Kelly

For us I really feel it is important to have just "us" time. We are the ones who are always together during hospital stays, etc. We won't be bringing cellphones, computer, nothing...if Savvy just wants to walk and do no rides or just wants to stay at GKTW a little longer or whatever I just wanted to be about our girl. She is the one who goes through it and this is her trip...for us it really is not about the rollercoasters it is about making her feel like a true princess .... she really is one and for her to experience a bunch of strangers who are simply kind to her....no poking for the smile...just smiles and kindness. Since she was born if a stranger smiled at her it probably meant she was going to get a needle in her foot or arm...

Of course, with this said...we only have one child to take care of....much easier to do!

 

[kellyw8863]

Thank you for your honest responses.

They would not be staying with us and would be paying their own ways. There is absolutely no way that we could justify asking MAW to include them. But I think you ladies are right - it will be so important to have a sit down define the moment talk with them before going.

 

[ndloewen]

Okay, I have a question for you all. Anyone ever bring non-immediate family members along on a Wish Trip? We have asked my husband's parents to come along with us in the event that this really does happen in April. His father has been dabbling in photography (has a nice camera, taking courses, winning contests, etc.) so we were hoping that he would be our photographer for the week. Also, they are seasoned travelers, and I know that they would have a great time watching their grandchildren. And I'm also hoping they could take Gabe at times so we could have some time with just the girls.

BUT...Now I'm having second thoughts. I truly want this week to be for the girls, and Ali especially. We have seen so many regressions in just the past six months, and we have no idea what the next year will bring. Both have already given up so much and I see this as our opportunity to make the past four years "right," if that makes sense. I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Any thoughts? Success stories? Nightmares?

Kelly

Hey guys, just popping in to say hi.

Wanted to share our experience here that worked out well for us. It was offered to us by our foundation that we could take one of our homecare nurses along (who are like family to us) since Noah's care was very complex. After throwing around the idea for a while, we decided that this trip was about our family and I didn't want to have to worry about another person. So after much discussion with our nurse, we decided to decline the offer from the foundation. Instead, we went on our own, and our nurse, who was still very eager to help out, came down for a few days with her hubby (paying their own way). We met up with them during 2 of our park days and toured together. (I don't think I actually got that far in my trip report). It worked out well, as she was able to help us out in the parks those 2 days to allow us to do some things with the older kids, but the rest of the time we could spend alone as a family.

I think you really need to just do what is best for your family. For some, it works out well to bring along a helper or two. If you do bring someone else along, have lots of discussion before the trip with very clear guidelines about what this trip is all about. If you are not close enough with them to do that, then you probably shouldn't be bringing them along.

 

[2specialkids]

Okay, I have a question for you all. Anyone ever bring non-immediate family members along on a Wish Trip? We have asked my husband's parents to come along with us in the event that this really does happen in April. His father has been dabbling in photography (has a nice camera, taking courses, winning contests, etc.) so we were hoping that he would be our photographer for the week. Also, they are seasoned travelers, and I know that they would have a great time watching their grandchildren. And I'm also hoping they could take Gabe at times so we could have some time with just the girls.

BUT...Now I'm having second thoughts. I truly want this week to be for the girls, and Ali especially. We have seen so many regressions in just the past six months, and we have no idea what the next year will bring. Both have already given up so much and I see this as our opportunity to make the past four years "right," if that makes sense. I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Any thoughts? Success stories? Nightmares?

Kelly

Hi Kelly! I just wanted to chime in on this since I just did it. I would recommend that if you decided it would be a good thing to have them along then stick with separate lodging and vehicles. Also only plan some of your days with them present so you can really focus on your kids.

I loved having my parents there but we ended up with only 1 vehicle and my parents stayed with us at GKTW (dad was our second adult & he paid for mom to come too). I think a second car would have made it much better since I was the only driver on our van. We could have been away from each other more and had some breathing room so to speak.

It was a nice trip but WAY TOO MUCH time together and I was constantly having to fight to spend time with Nikolas because my parents wanted to use the trip time "to bond with him & let me have time with Mikayla". Mikayla & I just wanted some "alone time" with Nikolas.

Don't get me wrong it was nice to have more help/hands but in hind sight I wish just the 3 of us were there for most of the trip.

 

[yinyanggirls]

I don't want this to turn into a "family" vacation where we sit around trying to decide what to do next (we've had plenty of those before).

Kelly, as far as the "what do we do next" aspect, I would recommend checking out the book "the Unofficial Guide to WDW". They are a little hard core about planning, but the purpose is to limit time waiting in lines, and avoiding the crowd patterns. As a wish family you will probably not spend much time in lines anyway, but it might help you to come up with a game plan ahead of time and avoid those "now what" arguments. I've heard of people here giving a list to each family member (in your case you could just give each kid one, if you wanted to skip the adults preferences all together) and have them fill out their "must dos", "like to dos" etc in a priority list. If your kids are too young you could just go over a tour book or website with them and see what they seem most excited about. It sounds a little hard core to have a list and a touring plan, but I think I want to have one so that we don't miss any of our top picks. I am prepared to deviate from it if we need to, but I want to go with some idea in mind. Just an idea....

 

[kellyw8863]

Hey guys, just popping in to say hi.

Wanted to share our experience here that worked out well for us. It was offered to us by our foundation that we could take one of our homecare nurses along (who are like family to us) since Noah's care was very complex. After throwing around the idea for a while, we decided that this trip was about our family and I didn't want to have to worry about another person. So after much discussion with our nurse, we decided to decline the offer from the foundation. Instead, we went on our own, and our nurse, who was still very eager to help out, came down for a few days with her hubby (paying their own way). We met up with them during 2 of our park days and toured together. (I don't think I actually got that far in my trip report). It worked out well, as she was able to help us out in the parks those 2 days to allow us to do some things with the older kids, but the rest of the time we could spend alone as a family.

I think you really need to just do what is best for your family. For some, it works out well to bring along a helper or two. If you do bring someone else along, have lots of discussion before the trip with very clear guidelines about what this trip is all about. If you are not close enough with them to do that, then you probably shouldn't be bringing them along.

Thank you for sharing your experience. If we bring my in-laws along, they will mostly be a help to our foster son so we can spend some time with the girls. He can be very needy (and based on his life's experiences, who can blame him), which can get exhausting. I'm concerned about us handling our own emotions on top of G's issues. I think key is making sure that we (our family and the inlaws) have the opportunity for lots of space. I did read Noah's blog. Many, many prayers to your family as you navigate through such a difficult time.

Hi Kelly! I just wanted to chime in on this since I just did it. I would recommend that if you decided it would be a good thing to have them along then stick with separate lodging and vehicles. Also only plan some of your days with them present so you can really focus on your kids.

I loved having my parents there but we ended up with only 1 vehicle and my parents stayed with us at GKTW (dad was our second adult & he paid for mom to come too). I think a second car would have made it much better since I was the only driver on our van. We could have been away from each other more and had some breathing room so to speak.

It was a nice trip but WAY TOO MUCH time together and I was constantly having to fight to spend time with Nikolas because my parents wanted to use the trip time "to bond with him & let me have time with Mikayla". Mikayla & I just wanted some "alone time" with Nikolas.

Don't get me wrong it was nice to have more help/hands but in hind sight I wish just the 3 of us were there for most of the trip.

I do think separate lodging and vehicles will be key, and honestly, I can see my inlaws wanting time away from us as much as we will need time away from them. They are huge beach fanatics, so I can honestly see them taking some time off to explore on their own. My husband and I have already had several talks with each other that this is a trip with the girls in mind. I know really it is Alison's time, but Maya has also given up so much over the past couple of years.

Kelly, as far as the "what do we do next" aspect, I would recommend checking out the book "the Unofficial Guide to WDW". They are a little hard core about planning, but the purpose is to limit time waiting in lines, and avoiding the crowd patterns. As a wish family you will probably not spend much time in lines anyway, but it might help you to come up with a game plan ahead of time and avoid those "now what" arguments. I've heard of people here giving a list to each family member (in your case you could just give each kid one, if you wanted to skip the adults preferences all together) and have them fill out their "must dos", "like to dos" etc in a priority list. If your kids are too young you could just go over a tour book or website with them and see what they seem most excited about. It sounds a little hard core to have a list and a touring plan, but I think I want to have one so that we don't miss any of our top picks. I am prepared to deviate from it if we need to, but I want to go with some idea in mind. Just an idea....

Thanks for the recommendation! I think my husband would kill me if I bought a book before we have confirmation, but I'll keep it in mind for when we are officially "there." When I was fresh out of college, nothing made me happier than spending two months planning every single aspect of a a backpacking trip to Europe. Of course half of those plans got blown out of the water when the time came, but that's okay. At any rate, I'll definitely check out The Unofficial Guide.

So I just got off the phone with the Boston MAW office, and I'm glad I called. They had no record of the online form I submitted a week and a half ago, so I've been sitting around waiting for a call for nothing. That was pretty much my suspicion. At any rate, we chatted a bit and she seemed familiar with Ali's metabolic doctor and said that she doesn't see any reason why she won't be approved after the formality of the paperwork is completed.

Thanks again for sharing your stories and for the words of wisdom!

Kelly