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

[iu97alum]

A really good friend, Eric, is applying for a job. They have to do video applications and be voted to be one of the top 50 to get an interview. He's asked us to send this to as many friends and family as we know so that he'll earn a spot in the top 50. Would you please take a few minutes of your day and watch the video, rate it and send to your friends and family as well? He's done so much for us especially since Emily is diagnoised that this would be a wonderful way for us to help thank him! He is an amazing teacher and would be quite perfect for this job!

Here's the LINK

Any question just ask away. Eric was the person we called when Emy was dx and came over and stayed with Sami all night while we were in the hosptial. He's the one who has always dropped everything on a moments notice for us when we needed him during Emily's treatment (and still). He's an amazing guy.

Thanks in advance!!

 

[Somer]

Thank you so much, I still can't believe that this is really happening for Jozlynn. If it wasn't for your encouragement to apply, we probably wouldn't ever get to do something so special for her. I'm gonna check out all of the other stories and trip reports, we're so excited!!!!

Yay, you made it here!!!
At the beginning of this thread (back on page one) there's a list of lots of trip reports that you can take a look at to give you an idea of what to plan for. And you can ask any and all questions on here too! And when you have your dates, start a pre-trip report of your own. It will make the trip even more special.

 

[Khalana]

Thank you so much, I still can't believe that this is really happening for Jozlynn. If it wasn't for your encouragement to apply, we probably wouldn't ever get to do something so special for her. I'm gonna check out all of the other stories and trip reports, we're so excited!!!!

YAY! So much fun to think that I had a hand in making magic for your sweet princess. However random! For everyone else's information: I "met" Somer at and Jozlynn at onetruemedia while watching a very touching video of their journey. I remember wondering if she had made a wish yet or not and contacted Somer through her profile. Pretty funny, really! It truly is a small world!

 

[StefaniLyn]

Welcome!! You're in the right place! Sounds like all of you deserve a wish!

Thanks so much for all the information. It is very helpful to hear from those that have already been through the process. I loved your PreTrip Report and am looking forward to reading the rest of your TR.

I ended up submitting the online application to our local MAW chapter on Monday evening. I haven't heard from them yet - do you think they'll call either way. I keep thinking maybe I put our phone number in wrong or some other stupid mistake.

I appreciate the info on the timeline and the "back up wishes" - I hadn't thought of that. My DH keep asking Bella what she wishes for - today it's Disney, yesterday it was Polly Pockets. I just get a kick out of watching her thought process.

Welcome, and your little girl sounds like she would definately qualify for a wish. This is a great place to find out lots of MAW information.

Thank you so much! I'm so glad to find this thread with so many amazing and helpful people. Out of curiosity, why couldn't MAW do the Disney Cruise but they were able to do the Caribbean? I think I would wish for a cruise if this were my Make-A-Wish, but I highly doubt Bella will be as she doesn't even know what a cruise is, lol! Did they tell you after you were approved that the waiting list was 6 months? Thanks again!

Welcome Stefanilyn & Somer! You'll find some great information here as well as a fabulous support group of people who've "been there done that" with all things medical.

Thank you so much! I've always enjoyed talking to parents who truly "get it" when it comes to special medical needs kiddos.

Soon as I went to Isabella's website, I said " I know that cute little red head with a big smile"...Parent 2 Parent right??

Yep, that's my Bella! The one and only, LOL! I love the P2P site as well but haven't made it over there much since the transition. I'm sorry to hear that you had difficulties getting a wish for Jake. What chapter are you from? Thankfully, they made the right decision in the end. I'm sad they don't consider all transplant kids as the risks those kids have for rejection is so high and so is the surgery itself. I hope those kids are able to find other Wish organizations to grant their wishes. IMO, Every kid deserves a wish, especially those that endure daily medical stuff that would make most grown-ups (including me) cry!

Bella's GI doc is all on board with getting her a wish so I hope he can persuade them if they are strict here in WI too. I honestly think she deserves one after all she's been through and everything she is still dealing with on a daily basis.

Did Jake get his wish yet? Was it Disney? If so, when did/do you go? Thanks again!

 

[LindaBabe]

A really good friend, Eric, is applying for a job. They have to do video applications and be voted to be one of the top 50 to get an interview. He's asked us to send this to as many friends and family as we know so that he'll earn a spot in the top 50. Would you please take a few minutes of your day and watch the video, rate it and send to your friends and family as well? He's done so much for us especially since Emily is diagnoised that this would be a wonderful way for us to help thank him! He is an amazing teacher and would be quite perfect for this job!

Here's the LINK

Any question just ask away. Eric was the person we called when Emy was dx and came over and stayed with Sami all night while we were in the hosptial. He's the one who has always dropped everything on a moments notice for us when we needed him during Emily's treatment (and still). He's an amazing guy.

Thanks in advance!!

He IS good! I would definitely vote for him, even without the "personal connection". The competition is tough though, and many of the applicants have lots of views.

 

[maroo]

Welcome Stefanilyn & Somer! You'll find some great information here as well as a fabulous support group of people who've "been there done that" with all things medical.

Has anybody heard from Maroo? Hope she had safe travels.

Hey guys!!! I am home!!!!

I just got back and will be catching up on all of my reading soon!

I was gone for 6 nights. I had a wonderful time! No one got sick! And I even got to rest some.

I got to meet Jason (tinytreasures), Mya (mcntosh) and Noah (ndlowen) at GKTW! Which was AWESOME!!!

Anyway...just wanted to let you guys know that I am back! I have lots of updating to do on all of the threads and will tackle that tonight and tomorrow!

 

[maroo]

I am considering submitting my daughter, Isabella, to receive a Make-A-Wish. Bella is 4 1/2 years old and has numerous medical complications. The long version of the story is on her website www.caringbridge.org/visit/isabellagriggs . The short version (which is still pretty long) is that she has a history of espohageal atresia, 3 congenital heart defects (1 repaired during open heart surgery at age 1), mild hearing loss, Celiac disease, epilepsy, and several other diagnoses. This past week, she spent 3 days in the hospital after losing 10% of her body weight and was diagnosed with pancreatic enzyme insufficiency. They are testing her for cystic fibrosis but we believe it will be negative. Bella has spent over 200 days in the hospital and had 10 major surgeries, and too many minor procedures to count. She struggles every day to eat (can only tolerate puree textures) after being tube fed for 4 years and never learning how to eat until this past summer when she spent 8 weeks in a hospital learning how. Her newest diagnosis requires her to take 6 capsules of medication 4X each day, likely for the rest of her life.

I spoke with her GI doc at an appointment this morning and he said he would definitely recommend Bella for a Wish. His exact words were "we have recommended kids for Wishes before and their medical history pales in comparison to what Bella has gone through" For a long time, people have been telling us we should do this for Bella but we never really looked into it because I thought it was for children who have terminal illnesses. Now I understand that "life-threatening" is the qualification and several of Bella's issues definitely fall into this category. I am really hoping that Bella qualifies even though her diagnosis isn't terminal.

I have briefly read many of the posts on this thread (through many tears I might add) and I have found it very helpful. I guess now I am wondering if anyone has any advice for us when applying for Make A Wish or when they call us. My hope is that Bella will be wishing for a Disney trip, but of course, that is up to her. How long does the Wish process take? Do they call right away or speak to the physician first (although I don't remember a space on the form for her doctor's name)? How do they ask a 4 year old what they wish for and get reasonable answers? (I'm worried that she'll ask for a real pony!) Also, if your child wished for Disney, how much did you budget for meals? We've gone to Disney before but always done the meal plan so never budgeted for food.

Thanks so much in advance for any advice or tips you can offer us. I have already gathered a great deal of information from this thread and plan to be a frequent flyer if Isabella is granted a Wish!

It certainly sounds to me like she would qualify for a wish!!!

You have found a wonderful group of folks on this board and particularly this thread...you will find folks that "get it" about medically needy kids!

Welcome!!

Hi, I'm Somer. My daughter Jozlynn just got accepted for make-a-wish. We are still waiting to hear from the wish granters, but Jozlynn's mind is made up on meeting the princesses. We originally mentioned Beaches resort where she could meet sesame street, but her wish is definitely to go to Disney world. We can't wait for it to become official.

And another wish family! Welcome!

I was in Disney for a very impromptu trip this week and missed out on the boards for a few days.

Welcome!

You have found an awesome thread...hopefully we will get to help you plan, etc!!

I just posted a ADDED bonus that Jake will be getting during his wish trip on his pre trip thread, if anyone is interested....

http://www.disboards.com/showthread.php?t=2034240&page=9

I also wanted to share with you all a AWESOME website if you are looking into renting a stroller for your child on your trip.

This rental place has high end strollers ( not alot of different styles to choose from) at great prices, plus if your a wish family, they take 30% of the price. They will deliver and pick up the stroller at GKTW free of charge too.

We are in the process of getting Jake a jogger stroller thru the seating clinic at the hospital, and this liberty jogger that I have been researching was actually a stroller to rent... So now I get to try it out and make 100% sure this is what will work for Jake before we go ahead and have insurance pay for it, cause once they buy it, your stuck with it.

So if anyone interested in renting a nice stroller with NO hassel...check them out, Shannon is the owner and she was wonderful with me...

http://www.orlandostrollerrentals.com/

That is SOOOOO cool! I do hope he gets to meet the players! That would be cool.

And thank you for the stroller info! I need to put that on post #2 where our info is...once I get all caught up on all of my reading!

 

[chcmama]

Thank you so much! I'm so glad to find this thread with so many amazing and helpful people. Out of curiosity, why couldn't MAW do the Disney Cruise but they were able to do the Caribbean? I think I would wish for a cruise if this were my Make-A-Wish, but I highly doubt Bella will be as she doesn't even know what a cruise is, lol! Did they tell you after you were approved that the waiting list was 6 months? Thanks again!

They said that the Disney cruises were really hard to get and they checked into it and couldn't do it. I know from looking at it ourselves that the Disney Cruise is quite a bit more expensive than Royal Caribbean, which is what we are going on. That may be part of it. They told us the night they came to talk to my dd about her wish that the soonest we could go was 6 mths. But, they had been doing a lot in our area so that may be why. I know lots of others have gone quite a bit sooner than that. It was fine, we weren't bothered by waiting. It gives us something to look forward to in May.

 

[Somer]

Yes, I'm so excited. I will go through and read the pre-trip reports.

I've been kina sidetracked over this story about a 10 month old baby in Portland,OR who needs a heart transplant but health insurance won't cover it, and they are desperately trying to raise $1.5 mil for it. Seattle children's denied them as well as hospitals in CA. It was on the news a few days ago. Yesterday I got in contact with my daughter's Cardiologist and Surgeons(at a different hospital in Portland) and they said they were going to get in contact with them ASAP. This morning he is being transported to a hospital that can help him, maybe the one I got in contact with??? we'll see. I'm just so happy for them!!
here's his link incase you want to follow- laithdougherty.info

Yay, you made it here!!!
At the beginning of this thread (back on page one) there's a list of lots of trip reports that you can take a look at to give you an idea of what to plan for. And you can ask any and all questions on here too! And when you have your dates, start a pre-trip report of your own. It will make the trip even more special.

 

[maroo]

Yes, I'm so excited. I will go through and read the pre-trip reports.

I've been kina sidetracked over this story about a 10 month old baby in Portland,OR who needs a heart transplant but health insurance won't cover it, and they are desperately trying to raise $1.5 mil for it. Seattle children's denied them as well as hospitals in CA. It was on the news a few days ago. Yesterday I got in contact with my daughter's Cardiologist and Surgeons(at a different hospital in Portland) and they said they were going to get in contact with them ASAP. This morning he is being transported to a hospital that can help him, maybe the one I got in contact with??? we'll see. I'm just so happy for them!!
here's his link incase you want to follow- laithdougherty.info

Ok...this IRRATES me. Nothing gets me going like an insurance company not paying for standard of care medicine!!!!!

I am so, so thankful that you were able to pull some strings and maybe get this sweet baby taken care of!! And those hospitals that denied him...they ought to be ashamed. Goodness. Isn't there a state run hospital that would have to care for the patient? Geez.

Sorry...that is a major soap box for me!

Please keep us posted!!!!

 

[StefaniLyn]

Ok...this IRRATES me. Nothing gets me going like an insurance company not paying for standard of care medicine!!!!!

I am so, so thankful that you were able to pull some strings and maybe get this sweet baby taken care of!! And those hospitals that denied him...they ought to be ashamed. Goodness. Isn't there a state run hospital that would have to care for the patient? Geez.

Sorry...that is a major soap box for me!

Please keep us posted!!!!

Don't apologize, I'm sure insurance issues are a major soap box issue for many parents with special needs kids. We had insurance issues with my DD last year. They denied (even after multiple appeals) a feeding program at Kennedy Krieger Institute in Baltimore - DD's last and only hope for learning how to eat and getting off the g-tube for the first time in her life. Our response to their final denial was this:

http://www.youtube.com/watch?v=EmAfYq3uDu8

We sent the video to everyone we knew who in turn sent it to everyone they knew. The power of people is evident. Just a couple days after posting the video, we received a call from our insurance company telling us they re-reviewed our case and apporoved her treatment.

I hope this family finds a way to get their child the heart transplant one way or another. We had so many people offer donations, but it would have been next to impossible to raise the $250000 we would have needed. I can't imagine trying to raise 1.5 million. I am always touched when I see/hear/read about strangers helping strangers - it renews my faith in humanity!

 

[Bill_Lin]

Hello to everyone planning of just returning from a trip, as well as my old friends. I have been off for a while for health reasons, but here I am back. Please humor me by checking out the links in my signature.

Does anyone have any specific questions about scheduling your week?

Bill

 

[Bill_Lin]

I would really appreciate a list of upcoming Wish Trips. If you have one, please PM me or post here. Is there a page on here for upcoming trips?

Are the BIG GIVE folks still around?

 

[LuvGoing2Disney7]

I would really appreciate a list of upcoming Wish Trips. If you have one, please PM me or post here. Is there a page on here for upcoming trips?

Are the BIG GIVE folks still around?

The BIG GIVE group is still blessing many families. They are still just as amazing as ever!!

For the list of trips check out the first post of this thread. Maroo is VERY well organized and has it all listed on post 1 & 2

Welcome Back

 

[Somer]

OMG, I saw this video a few months ago. She's gorgeous. How's she doing now? That's great that the insurance finally gave in, but you should have never had to fight so hard for it!!!

My daughter will probably be put on the heart transplant list in June and now I have so many questions for her doctors. We live in WA but she recives all of her surgeries and hospital stays in Portland,OR. So far the WA state insurance has paid for everything even though it has all been done in OR because the seattle childrens told us there was no hope for our baby. This case has certainly made me scared, I hope we never end up in the same position.

Don't apologize, I'm sure insurance issues are a major soap box issue for many parents with special needs kids. We had insurance issues with my DD last year. They denied (even after multiple appeals) a feeding program at Kennedy Krieger Institute in Baltimore - DD's last and only hope for learning how to eat and getting off the g-tube for the first time in her life. Our response to their final denial was this:

youtube.com/watch?v=EmAfYq3uDu8

We sent the video to everyone we knew who in turn sent it to everyone they knew. The power of people is evident. Just a couple days after posting the video, we received a call from our insurance company telling us they re-reviewed our case and apporoved her treatment.

I hope this family finds a way to get their child the heart transplant one way or another. We had so many people offer donations, but it would have been next to impossible to raise the $250000 we would have needed. I can't imagine trying to raise 1.5 million. I am always touched when I see/hear/read about strangers helping strangers - it renews my faith in humanity!

 

[maroo]

Don't apologize, I'm sure insurance issues are a major soap box issue for many parents with special needs kids. We had insurance issues with my DD last year. They denied (even after multiple appeals) a feeding program at Kennedy Krieger Institute in Baltimore - DD's last and only hope for learning how to eat and getting off the g-tube for the first time in her life. Our response to their final denial was this:

http://www.youtube.com/watch?v=EmAfYq3uDu8

We sent the video to everyone we knew who in turn sent it to everyone they knew. The power of people is evident. Just a couple days after posting the video, we received a call from our insurance company telling us they re-reviewed our case and apporoved her treatment.

I hope this family finds a way to get their child the heart transplant one way or another. We had so many people offer donations, but it would have been next to impossible to raise the $250000 we would have needed. I can't imagine trying to raise 1.5 million. I am always touched when I see/hear/read about strangers helping strangers - it renews my faith in humanity!

You are a GENIUS!!!!

I am a "reimbursement specialist" for a cancer clinic in Mississippi. Which means I fight with insurance companies all day on behalf of patients. I basically stay on hold most of the day!

We deal with adults, not kids, and UHC is the WORST, WORST, WORST insurance company to deal with. Particularly the GM version of UHC (who refuse to pay for anti-nausea drugs with chemotherapy).

I am so in awe of you. What an awesome idea. And what an awesome way to fight.

We have gone to the insurance commissioner, the Governor, had patients write letters...but you have just given me a new avenue. You Tube! What a fantastic idea!!

And your presentation was awesome. I particularly like the..."It's gross but we get to deal with it 4 times a day!"

How is she now?


I am in awe...really.

 

[maroo]

Hello to everyone planning of just returning from a trip, as well as my old friends. I have been off for a while for health reasons, but here I am back. Please humor me by checking out the links in my signature.

Does anyone have any specific questions about scheduling your week?

Bill

Bill!!! What's up!

I think you were on for a little while when I started. I have several of your hints on post 2! We miss you around here!!

I would really appreciate a list of upcoming Wish Trips. If you have one, please PM me or post here. Is there a page on here for upcoming trips?

Are the BIG GIVE folks still around?

YES!! The Big Give folks are definitely around! We try to reach every Wish family that we know with a pre-trippie going (if we have time to organize it, etc). But we are still here!!

The upcoming trips are on post 1...we don't have many right now...I think 2 or 3. We are hoping for some more.

We have 4 families at GKTW right now, though! So we should have some great TR's coming in the next few weeks!

Thank you for posting and I definitely hope you are able to stay around and help us help these family.

How is your family? How are you? I hope you guys are all feeling better!

 

[Khalana]

Hello to everyone planning of just returning from a trip, as well as my old friends. I have been off for a while for health reasons, but here I am back. Please humor me by checking out the links in my signature.

Does anyone have any specific questions about scheduling your week?

Bill

Wow! You're like a celebrity around here. Nice to have you back!

 

[Khalana]

Don't apologize, I'm sure insurance issues are a major soap box issue for many parents with special needs kids. We had insurance issues with my DD last year. They denied (even after multiple appeals) a feeding program at Kennedy Krieger Institute in Baltimore - DD's last and only hope for learning how to eat and getting off the g-tube for the first time in her life. Our response to their final denial was this:

http://www.youtube.com/watch?v=EmAfYq3uDu8

We sent the video to everyone we knew who in turn sent it to everyone they knew. The power of people is evident. Just a couple days after posting the video, we received a call from our insurance company telling us they re-reviewed our case and apporoved her treatment.

I hope this family finds a way to get their child the heart transplant one way or another. We had so many people offer donations, but it would have been next to impossible to raise the $250000 we would have needed. I can't imagine trying to raise 1.5 million. I am always touched when I see/hear/read about strangers helping strangers - it renews my faith in humanity!

I just watched your video and it was so touching. She really is a sweetie!

 

[dmbfan]

Did Jake get his wish yet? Was it Disney? If so, when did/do you go? Thanks again!

Yes Jake got his wish...and it was Disney. We leave a month from today...

Jake is so excitied...ok we are all so excitied...

Have you seen your Dr yet? Please keep us posted...