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

[AmberGreenawalt]

I can help answer this one. There are really two potential questions here, so I'll address both.

The first is how long does it take for a child to be approved to receive a wish. That's almost entirely dependent on getting some paperwork back from the doctor, because chapters have to have a signed piece of paper saying your child fits MaW eligibility rules before they can move on in the process.

The second place you could be hung up is the assigning of wish granters. Once a child has been approved, he or she goes onto a list of all available wish children in that chapter, and the local wish granters sign up for children from that list. Being selected can happen immediately or take a while depending on the number of volunteers, the current number of wishes they're already working on, how far you are from the local volunteers and the number of other children on the list. The time on that list can vary greatly. I'd say your first child getting from approved to having a team assigned in under a week is the exception rather than the rule.

If you haven't received notice that she's even eligible, I would call your local chapter say your first child was already meeting his wish granters within a week, so you were curious where you were in the process with your daughter. If you've received notice she's eligible, then she's almost certainly on the available children list, and it's just a matter of the right two people coming along to sign up.

ETA: Okay, I looked at your PTR and saw you requested the same wish granters. That could also easily hold up the process because they could have several ongoing wishes and not enough free time to add another. Or one could have moved or have a family issue or any number of things where one doesn't feel like she has enough time or energy for Savannah's wish right now. And I don't mean that as a negative - I'd love to take on all the kids on the waiting list, but I can only balance between 2-4 depending on real life. Silly work keeping me from volunteering all of my time.

I have done multiple wishes for one family, but those happened essentially simultaneously, so I'm not much help about coming back to a family years later.

Thank you so much for the great response! I am thinking the hang-up may be the doctor paperwork. Her mito specialist is stretched pretty thin. I recently called to set up a regular appointment with her and her FIRST available was October 4th. I think what I will do is call MAW and give them some of her other doctor's contact info....first and foremost her pediatrician who has been the gate-keeper for all of her many specialists all along. I email back and forth with her pediatrician regularly and will see her for a visit Savannah has next week.

As for the wish granter issue....Our past wish granter actually called MAW and told them that she would like to be assigned to Savannah. She has no other children she has been working on. So I don't think that's the hang-up but it might be something else.

Thanks again for all of your insight. We'll keep praying... Savannah's 4th birthday is August 2nd and we are really hoping to be able to tell her wish is going to come true for her birthday.

 

[mdfalls]

I have a question for someone who flies more than i do.... I posted this on my trip thread, but wanted to post it here in case more people would see it.

Spencer has to take Steriod for his muscular dystrophy every day...my problem and question as far as flying goes is this: We order these steriods from overseas. They aren't sold in the USA. His doctor still has to write a prescription, which we fax to the company and they fill it as any other prescription would be and mail it to us. But when it comes, it does NOT have a label on it. Nothing. Just the medicine in a box...clearly identified as to what the med is etc...the box is the pharmacutical box it comes in. However there is no RX label with spencers name, prescribing doctor etc... We do still have the prescription (because we fax it).

My real question is: I know trying to get this carried on the plane with the other meds WILL be a hassel. Would it be a problem for me to just pack it in the suitcase with checked bags? I know I run the risk of the bag getting lost, but that seems a better risk than getting to the airport and running the risk of them not letting us take it at all, and our bags are already checked at that point.

Has anyone else had an issue like this?

 

[mdfalls]

I also wanted to let anyone know who is going on wish trips after us....we are more than willing to send your child disney postcards while we are there from their favorite characters! (and even check the GKTW giftshop to see if they have postcards.) We'd actually LOVE the chance to do this for some kids while we are there! Our dates are listed below in my signature.

 

[GavandGraciesMommy]

Thank you so much for the great response! I am thinking the hang-up may be the doctor paperwork. Her mito specialist is stretched pretty thin. I recently called to set up a regular appointment with her and her FIRST available was October 4th. I think what I will do is call MAW and give them some of her other doctor's contact info....first and foremost her pediatrician who has been the gate-keeper for all of her many specialists all along. I email back and forth with her pediatrician regularly and will see her for a visit Savannah has next week.

As for the wish granter issue....Our past wish granter actually called MAW and told them that she would like to be assigned to Savannah. She has no other children she has been working on. So I don't think that's the hang-up but it might be something else.

Thanks again for all of your insight. We'll keep praying... Savannah's 4th birthday is August 2nd and we are really hoping to be able to tell her wish is going to come true for her birthday.

I would suggest contacting your local pharmacy or doctor or seeing if the meds can be sent to them and then they can varify it. My daughters eye drops come like that but they are sent to the pharmacy and then they put them in one of those big orange pill bottles with a prescription sticker on it. (Small private owned local pharmacies are more willing to help) That would be my suggestion of routes. My husband is a police officer and I asked him. He says that it is illegal to carry any medications in a bottle without a label. Techinically he said they can even give you a ticket if they are in a med set without a label. I would worry about getting through security with your bag. I know I had a small thing of baby powder in my bag and it triggered a search where they went through my whole bag. Sorry I know this isnt much help but maybe it is some route to take You also might be able to ship them to GKTW with a copy of the prescription in the original box before you go so you do not have to worry about it. That might be even easier. You will want to double check though to make sure that its all marked and legal

Also I would absolutely love it if you would be willing to send my kids a postcard from Disney If you dont mind just private message me and I will give you my address

 

[mdfalls]

I sent MAW an email asking about the prescription. I'm wondering if a pharmacy here would even label it for me being as it's not sold in america. (but apparently is legal for us to buy as our doctor writes a prescription and they send it to us?) I'm about to order some more and I may call the woman that is our contact at the UK pharmacy and ask her if there is some way they can "label" at least one box for us. I think I might also be able to see if his doctor can substitute the US steroid (predisone I think might be what they give here?) for just a week. I'm not sure if switching would cause a problem or not. (We get the one from the UK because it causes less side effects and doesn't have the bloating effects that the usa one has....so it's actually what most patients with muscular dystrophy prefer to take if they can afford it...you have to pay for it yourself, though the cost is not that bad. I know that some patients who can't do that do take the USA alternative and our insurance would likely cover the cost of that for a week if we needed it.) I much prefer him sticking with what he has though. I may call give kids the world and see if I can mail it to them, along with the prescription. (just enough to get us through being there.) Maybe the people from make a wish will have an idea.

 

[mdfalls]

and I meant to add...I am going to try figuring out how to pm you on here. if you don't get one from me, let me know. I would love to send your kiddos postcards,but I am new at the pm'ing and posting on the site. sometimes I am quite unskilled at it! LOL

 

[Cheshire Figment]

I have a question for someone who flies more than i do.... I posted this on my trip thread, but wanted to post it here in case more people would see it.

Spencer has to take Steriod for his muscular dystrophy every day...my problem and question as far as flying goes is this: We order these steriods from overseas. They aren't sold in the USA. His doctor still has to write a prescription, which we fax to the company and they fill it as any other prescription would be and mail it to us. But when it comes, it does NOT have a label on it. Nothing. Just the medicine in a box...clearly identified as to what the med is etc...the box is the pharmacutical box it comes in. However there is no RX label with spencers name, prescribing doctor etc... We do still have the prescription (because we fax it).

My real question is: I know trying to get this carried on the plane with the other meds WILL be a hassel. Would it be a problem for me to just pack it in the suitcase with checked bags? I know I run the risk of the bag getting lost, but that seems a better risk than getting to the airport and running the risk of them not letting us take it at all, and our bags are already checked at that point.

Has anyone else had an issue like this?

TSA does not require that medicines be in their original container, and their web site specifically states that "daily" containers are allow. (Unfortunately I am currently working from my laptop and I don't have the bookmarked link to that part of their rules.)

I tend to have five or six air round trips per year. This year I even had one to France. I carry a backpack on board which has a CPAP machine with its tubing, at least two "daily" medications boxes, Insulin and syringes, and other medical-related stuff. I just run it through the X-Ray machine and nev er have a problem.

 

[GavandGraciesMommy]

TSA does not require that medicines be in their original container, and their web site specifically states that "daily" containers are allow. (Unfortunately I am currently working from my laptop and I don't have the bookmarked link to that part of their rules.)

I tend to have five or six air round trips per year. This year I even had one to France. I carry a backpack on board which has a CPAP machine with its tubing, at least two "daily" medications boxes, Insulin and syringes, and other medical-related stuff. I just run it through the X-Ray machine and nev er have a problem.

Thats awesome! That will make things a lot easier for us as well

 

[yeti5353]

I have a question for someone who flies more than i do.... I posted this on my trip thread, but wanted to post it here in case more people would see it.

Spencer has to take Steriod for his muscular dystrophy every day...my problem and question as far as flying goes is this: We order these steriods from overseas. They aren't sold in the USA. His doctor still has to write a prescription, which we fax to the company and they fill it as any other prescription would be and mail it to us. But when it comes, it does NOT have a label on it. Nothing. Just the medicine in a box...clearly identified as to what the med is etc...the box is the pharmacutical box it comes in. However there is no RX label with spencers name, prescribing doctor etc... We do still have the prescription (because we fax it).

My real question is: I know trying to get this carried on the plane with the other meds WILL be a hassel. Would it be a problem for me to just pack it in the suitcase with checked bags? I know I run the risk of the bag getting lost, but that seems a better risk than getting to the airport and running the risk of them not letting us take it at all, and our bags are already checked at that point.

Has anyone else had an issue like this?

I dont think its a problem as you are not traveling overseas.
two options seem reasonable here, put a copy of the prescription on the box or put the meds in a prescription bottle. sometimes if your doc writes a special prescription for a labe only a friendly pharmacist may make a label for you

 

[yeti5353]

I dont think its a problem as you are not traveling overseas.
two options seem reasonable here, put a copy of the prescription on the box or put the meds in a prescription bottle. sometimes if your doc writes a special prescription for a labe only a friendly pharmacist may make a label for you

another option would be to just put them in another type of pill bottle I guess and carry the stub of the box and prescription with you. I was trying to figure out if we could fly with meds in a pill sorter box and it looks like TSA does not really care- but got mixed answers on some sites.

I also believe it is legal for doctors to write a presciption label so you could have the doc hand write a label and put it on a bottle....

 

[mdfalls]

another option would be to just put them in another type of pill bottle I guess and carry the stub of the box and prescription with you. I was trying to figure out if we could fly with meds in a pill sorter box and it looks like TSA does not really care- but got mixed answers on some sites.

I also believe it is legal for doctors to write a presciption label so you could have the doc hand write a label and put it on a bottle....

thanks everyone! Awesome on so many levels. I do have the original prescription also, so I can produce that if there is an issue. You guys are super helpful!

 

[blessedmom4]

thanks everyone! Awesome on so many levels. I do have the original prescription also, so I can produce that if there is an issue. You guys are super helpful!

Adding my two cents since I have the link. If you have more questions it is pretty detailed and you will know it is accurate. It addresses lots of scenarios that might come up. We traveled with TWO full medical bags as well as a Bi-pap machine four times last year and never once had a problem other than the hassle of getting things back together after the screening. Daughter was in a W/C, with a leg brace and we needed to bring her medical drink.
From TSA Website:
Non-liquid or gel medications of all kinds such as solid pills, or inhalers are allowed through the security checkpoint once they have been screened. We recommend, but do not require, that your medications be labeled to assist with the screening process.

 

[maroo]

[


Give Kids the World is an amazing place - and that is only at Disney World florida and I don't think they do the dolphin only wish through GKTW either? They do the Universal and Disney World wishes at GKTW.

Molly wanted to do the dolphin wish and our chapter told us we would still stay at GKTW and get WDW or other passes, the difference is the trip is only 5 days, so only three non travel days. Molly decided to go for the regular 7 day trip to WDW and we raised money to pay for a day at discovery cove to do the dolphin thing.

On the subject of stuff- I am worried about this too. Molly has some things i will need to haul around and she is at this point refusing to ride in a wheel chair at disney. We may have to get one "for her stuff" and just see if she does not end up in by the end of the trip. especially on our long epcot day. I really need some sort of secure shopping cart LOL!

That is really good to know! I had no idea that they would do the dolphin wishes!

I would DEFINITELY get her a wheelchair. Does she have one you can bring? The airport, around GKTW, etc...all of that walking may really wear her out.

If you don't have one - PM me and I can give you the name and number for a company down there that has child sized folding wheelchairs (better than getting adult size at Disney) and they really try to give Wish Families a huge break on renting those.

Big day today... we got our welcome packet from MAW! We have the names of Braden's wish granters! It looks like a married couple and we hope to hear from them soon!

On another note, I just realized how hooked into the Disney mindset our whole family is right now. We are sitting here watching the opening ceremonies for the Olympics, and we saw this on the TV... and guess what the first thing we all shouted out at the same time was???

HIDDEN MICKEY!!!

It's gonna be a long wait!!!

AWESOME!!!!

Thank you so much for the great response! I am thinking the hang-up may be the doctor paperwork. Her mito specialist is stretched pretty thin. I recently called to set up a regular appointment with her and her FIRST available was October 4th. I think what I will do is call MAW and give them some of her other doctor's contact info....first and foremost her pediatrician who has been the gate-keeper for all of her many specialists all along. I email back and forth with her pediatrician regularly and will see her for a visit Savannah has next week.

As for the wish granter issue....Our past wish granter actually called MAW and told them that she would like to be assigned to Savannah. She has no other children she has been working on. So I don't think that's the hang-up but it might be something else.

Thanks again for all of your insight. We'll keep praying... Savannah's 4th birthday is August 2nd and we are really hoping to be able to tell her wish is going to come true for her birthday.

Joining you in praying that the dates work out perfectly for you guys!!

I have a question for someone who flies more than i do.... I posted this on my trip thread, but wanted to post it here in case more people would see it.

Spencer has to take Steriod for his muscular dystrophy every day...my problem and question as far as flying goes is this: We order these steriods from overseas. They aren't sold in the USA. His doctor still has to write a prescription, which we fax to the company and they fill it as any other prescription would be and mail it to us. But when it comes, it does NOT have a label on it. Nothing. Just the medicine in a box...clearly identified as to what the med is etc...the box is the pharmacutical box it comes in. However there is no RX label with spencers name, prescribing doctor etc... We do still have the prescription (because we fax it).

My real question is: I know trying to get this carried on the plane with the other meds WILL be a hassel. Would it be a problem for me to just pack it in the suitcase with checked bags? I know I run the risk of the bag getting lost, but that seems a better risk than getting to the airport and running the risk of them not letting us take it at all, and our bags are already checked at that point.

Has anyone else had an issue like this?

I tend to worry too much about stuff like this and end up finding that they don't give you too much problem about stuff like this. If you bring the original box where you got the meds and a copy of the prescription, you should be totally fine.

And I saw your comment later about just using the US version - I would definitely NOT change any meds at all on your trip - there will be so many variables anyway with the traveling that you won't want more things to be different.

I also wanted to let anyone know who is going on wish trips after us....we are more than willing to send your child disney postcards while we are there from their favorite characters! (and even check the GKTW giftshop to see if they have postcards.) We'd actually LOVE the chance to do this for some kids while we are there! Our dates are listed below in my signature.

 

[Lilfoot93]

Big day today... we got our welcome packet from MAW! We have the names of Braden's wish granters! It looks like a married couple and we hope to hear from them soon!

On another note, I just realized how hooked into the Disney mindset our whole family is right now. We are sitting here watching the opening ceremonies for the Olympics, and we saw this on the TV... and guess what the first thing we all shouted out at the same time was???

HIDDEN MICKEY!!!

It's gonna be a long wait!!!

How exciting to get your packet! Hopefully you will hear from them soon! I love the hidden mickey

Jackie

 

[carebearkidney]

I also wanted to let anyone know who is going on wish trips after us....we are more than willing to send your child disney postcards while we are there from their favorite characters! (and even check the GKTW giftshop to see if they have postcards.) We'd actually LOVE the chance to do this for some kids while we are there! Our dates are listed below in my signature.

Aww - that is so sweet of you!!

 

[Lilfoot93]

I also wanted to let anyone know who is going on wish trips after us....we are more than willing to send your child disney postcards while we are there from their favorite characters! (and even check the GKTW giftshop to see if they have postcards.) We'd actually LOVE the chance to do this for some kids while we are there! Our dates are listed below in my signature.

That is very sweet of you! The kids will love it!

Jackie

 

[yeti5353]

bought shirts to make tye dye mickey shirts but not the dye this week.

made a tutu for the stuffed bear Molly is attached to, going to make one for Molly too to bring to GKTW for parties

Made a count down calendar! I am going to give both girls small gifts on the x10 days, and I even have some of those gifts!

and sitting at the girls dance class today I decided to make a bunch of chinese knotted friendship bracelets with "wish" on them and ordered some mickey head beads. going to give them out to people at GKTW and in the parks. that should keep me busy during all the rehersals coming up.

 

[AmberGreenawalt]

I updated Savannah's PTR with our January 2011 photos....You can see this is where her love for Disney and the Princesses just bloomed!

http://www.disboards.com/showthread.php?t=2956109&page=4

Still no word from MAW. But we continue to pray. Please send a couple up for us too.

Hope everyone is happy and healthy tonight.

Much Love,
Amber

 

[newdrama12]

bought shirts to make tye dye mickey shirts but not the dye this week.

made a tutu for the stuffed bear Molly is attached to, going to make one for Molly too to bring to GKTW for parties

Made a count down calendar! I am going to give both girls small gifts on the x10 days, and I even have some of those gifts!

and sitting at the girls dance class today I decided to make a bunch of chinese knotted friendship bracelets with "wish" on them and ordered some mickey head beads. going to give them out to people at GKTW and in the parks. that should keep me busy during all the rehersals coming up.

sounds like a lot of good projects! when are you guys coming to GKTW, so that I can keep an eye out for you? I'm there at least one day every week as a volunteer.

 

[carebearkidney]

I updated Savannah's PTR with our January 2011 photos....You can see this is where her love for Disney and the Princesses just bloomed!

http://www.disboards.com/showthread.php?t=2956109&page=4

Still no word from MAW. But we continue to pray. Please send a couple up for us too.

Hope everyone is happy and healthy tonight.

Much Love,
Amber

Yay - update! Heading over.
Sorry you haven't heard back yet, it's coming, it's coming, it's coming...I have to keep reminding myself too!