Not quite "Make a wish" but I could use some advice. in the Philly area

[NateNLogansDad]

Short end: Does Disney do anything to help out families who can't quite afford a trip who have an infant at home who is in bad condition?

Long Side:
There's a guy I know (Fellow truck driver) who has a son around 2 yrs old who has been diagnosed with a rare disease I probably can't pronounce if you told me ten times what it was called. I'm sure there are different symptoms to it but the main problem is the fact that he has literally hundreds of seizures a day and has been in the hospital more than I have in my 32 yrs being on this earth. This Friday, they will be installing something in his chest that sounds like a pacemaker in hopes of controlling the seizures and reduce the number that he has every day. If this doesn't work, they will need to basically seperate his brain down the middle.

Now, like I said, I'm just a truck driver but to me this doesn't sound good at all. I have 2 little guys of my own and my heart breaks every time I see him but I always ask him how things are just so he knows that someone else in this world cares. I don't want to ask him if this is teminal because I don't think he wants to face it if it is, and to be totally honest, I'm not sure I could handle hearing it.

Last night I was at the warehouse where he works and he pulled me aside and asked me about Disney World because he knows my family loves it so much. He wanted to know about prices and how to go about booking it and I told him I would walk him through everything he would ever need to know. My problem was his eyes. I saw a fathers pain and I'm not sure if he thinks this is the only time he will ever get the whole family there together if you know what I mean.

I honestly bought a lottery ticket tonight and made a wish on a star (I'm not kidding) that I could send him and the whole family down as soon as this next surgery was over and his son was fully recovered. Now, being an a realist I know what the odds are of that happening which is why I came here to open up to you guys and gals out there. Is there any agencies out there or does Disney do something to help out families like this one? Like I said, I don't have the heart to ask him if he's concidered "Make A Wish." And he has no idea I'm even posting this on the web so if I don't hear anything back, he won't be dissapointed. I just felt like I needed to do something.

If for nothing else, thanks for letting me rant a little. I feel better just getting it out there.

-Rob

 

[Mackey Mouse]

That was not easy to read... I make donations to the Make a Wish Foundation, but I never quite know how it works for people to get the trips. They must have to apply, I do not think Disney does anything on its own.

As truck drivers, do you belong to a union? Can they help? I am just thinking off the top of my head.....I do hope you win the lottery, wouldn't that be terrific and you could help him.

As someone who has just watched her husband battle cancer, and finally succumb to it, it did his heart good when he would get a break from chemo and we could go to WDW. I wish that for your co-worker.

 

[INDISMOM]

There is an organization called Give Kids the World in Orlando. They work with wish granting organizations around the world to bring terminally and chronically ill children to Orlando for a week long visit.

You have to be sponsored by a wish granting organization in your area and you doctor has to recommend you. Here is a list of the wish granting organizations in PA that work with Give Kids the World:

Wish-Granting Organization Contact Address Phone Fax Email
Make A Wish of Greater PA & Southern W.VA
Erica Thomas
The Gulf Tower
707 Grant Street, 37th Floor
Pittsburgh, PA 15219
412-471-9474
412-471-1897
Email Contact

Make A Wish of Phila. & SE PA
Yael Tacher
One Valley Square, 512 Township Line Road
Suite 133
Blue Bell, PA 19422
215-654-9355
215-654-9354
Email Contact

Lycoming Brotherhood County
Robert McManigal
608 Village Road
Pennsdale, PA 17756
570-546-6221
570-368-1382
Email Contact

Palermo Athletic Foundation
David Palermo
PO Box 304
Drums, PA 18222
5704010-0388
-
Email Contact

Jamie's Dream Team
Kim Shidel
4304 Walnut Street
Suite 1
McKeesport, PA 15132
412-751-1773
412-754-1223
Email Contact

Dreams Come True
Rayann Vasko
PO Box 21167
Lehigh Valley, PA 18002
610-865-3475
610-865-4710
Email Contact

Dream Factory of Pennsylvania
Jennifer Pfister
210 East 1st Ave
Altoona, PA 16602


My niece was granted a trip a few years ago. It is an amazing organization and the experience was once in a lifetime. My sister was overwhelmed with all of the things they were able to do.

I hope this helps. Being that they work with chorincally ill children, not just terminally ill children perhaps that will help.

I will keep this family in my prayers.

 

[maroo]

Short end: Does Disney do anything to help out families who can't quite afford a trip who have an infant at home who is in bad condition?

Long Side:
There's a guy I know (Fellow truck driver) who has a son around 2 yrs old who has been diagnosed with a rare disease I probably can't pronounce if you told me ten times what it was called. I'm sure there are different symptoms to it but the main problem is the fact that he has literally hundreds of seizures a day and has been in the hospital more than I have in my 32 yrs being on this earth. This Friday, they will be installing something in his chest that sounds like a pacemaker in hopes of controlling the seizures and reduce the number that he has every day. If this doesn't work, they will need to basically seperate his brain down the middle.

Now, like I said, I'm just a truck driver but to me this doesn't sound good at all. I have 2 little guys of my own and my heart breaks every time I see him but I always ask him how things are just so he knows that someone else in this world cares. I don't want to ask him if this is teminal because I don't think he wants to face it if it is, and to be totally honest, I'm not sure I could handle hearing it.

Last night I was at the warehouse where he works and he pulled me aside and asked me about Disney World because he knows my family loves it so much. He wanted to know about prices and how to go about booking it and I told him I would walk him through everything he would ever need to know. My problem was his eyes. I saw a fathers pain and I'm not sure if he thinks this is the only time he will ever get the whole family there together if you know what I mean.

I honestly bought a lottery ticket tonight and made a wish on a star (I'm not kidding) that I could send him and the whole family down as soon as this next surgery was over and his son was fully recovered. Now, being an a realist I know what the odds are of that happening which is why I came here to open up to you guys and gals out there. Is there any agencies out there or does Disney do something to help out families like this one? Like I said, I don't have the heart to ask him if he's concidered "Make A Wish." And he has no idea I'm even posting this on the web so if I don't hear anything back, he won't be dissapointed. I just felt like I needed to do something.

If for nothing else, thanks for letting me rant a little. I feel better just getting it out there.

-Rob

Bless his heart!!! And yours for being so concerned about them.

Once the child is 2.5 years old, he can apply for a wish with the Make a Wish foundation. I am not sure of the ages for the other organizations. They generally grant wishes for children 3 years and older - but I think you can start the process at 2.5.

I would definitely get them to apply.

As far as what Disney does on their own...really not much. They give a TON of money, time, energy, etc to Give Kids the World (which is where most wish families stay when they go to Disney) and they give free tickets, etc. But they don't do much with an individual family.

The best bet for them is probably to stay at a value resort and get some sort of free dining promotion. They will need tickets, which are expensive and traveling down there can be expensive too.

I want to send you to 2 different places for more information...one is the disABILITIES board here on the DIS - there is a lot of great information about things they will need to know when they get there. Particularly, I think they would need a "stroller as a wheelchair" tag - but they should visit guest services when they get there.

You can also check out the wish trippers thread - blue link in my signature - for more information about wish trips. That thread is very supportive for families going through junk like this, too, so that can be helpful to some families.

That was not easy to read... I make donations to the Make a Wish Foundation, but I never quite know how it works for people to get the trips. They must have to apply, I do not think Disney does anything on its own.

As truck drivers, do you belong to a union? Can they help? I am just thinking off the top of my head.....I do hope you win the lottery, wouldn't that be terrific and you could help him.

As someone who has just watched her husband battle cancer, and finally succumb to it, it did his heart good when he would get a break from chemo and we could go to WDW. I wish that for your co-worker.

I just wanted to give you a little information about MAW -

Basically the child, parents, social worker, friend, or doctor - really anyone - can "refer" a child to get a wish. The MAW folks then contact the family (if the family didn't refer) and get the doctor that is treating the child for the life threatening condition. They get all the information and paper work in and then tell the family (child) that they have been granted a WISH!

Then wish granters come to the house and in some way help them figure out what is their biggest wish. They are very good about giving the children a lot of different options and kids pick all kinds of interesting things - but about half the kids pick Disney World.

Then the MAW organization sets them up to go by contacting GKTW. The family either stays at Give Kids the World (an AMAZING place where they have 2 bedroom villas for each family and more kid friendly magical things than I could imagine) or they stay on Disney property (this is rare - as most families want to stay at GKTW) sometimes GKTW is full and they have to stay on Disney Property - especially if the wish has to happen fast.

Disney provides each family with a 3 Day Park Hopper, a Free Photopass CD and other things to help make their trip magical. I think Disney also donates some money?? Maybe not...but they give a lot of goods to GKTW. They also donate time by sending characters out there on a regular basis, etc.

Universal, Sea World, Boston Market and many other organizations also give a significant amount of tickets, food, etc to the organization.

Most states MAW chapters pay for pretty much everything the family needs for traveling plus a little souvenier money for the wish child.

The wishes are simply magical! I love to follow the pre-trip reports and trip reports - they bring a smile to my face even with the difficult circumstances of the families.

 

[NateNLogansDad]

Guys, I'm tearing up over here! Thank you so much for all this info, it really means so much to me and I'm sure it will mean even more to him. Tonight, before I go in to work, I'm going to print this all out (minus what I wrote) and slip it to him before he leaves for his daily run to NY. So if anybody has anything else to offer I will make sure he gets it. I figure the more information he has, the better his chances are of making this happen. I can't thank you all enough. I promise to keep you updated if this all works out.

 

[NateNLogansDad]

That was not easy to read... I make donations to the Make a Wish Foundation, but I never quite know how it works for people to get the trips. They must have to apply, I do not think Disney does anything on its own.

As truck drivers, do you belong to a union? Can they help? I am just thinking off the top of my head.....I do hope you win the lottery, wouldn't that be terrific and you could help him.

As someone who has just watched her husband battle cancer, and finally succumb to it, it did his heart good when he would get a break from chemo and we could go to WDW. I wish that for your co-worker.

Well, I checked my numbers this morning and it wasn't meant to happen that way I guess. But did you see all the other info people posted??? I'd say I hit it big today!

I'm so sorry to hear about your husband. We've lost family the same way and I can say that I understand what you've been through but I also know that no one will feel the same pain, or at least it feels that way. You have a good heart and I hope that never fades. I'm sure he knew that he was lucky to have you. I know that I'm just another name on the wall, but if you ever need to just vent I've been told i'm a good listener. Send me a PM anytime.

-Rob

 

[Haybuggsmom]

Short end: Does Disney do anything to help out families who can't quite afford a trip who have an infant at home who is in bad condition?

Long Side:
There's a guy I know (Fellow truck driver) who has a son around 2 yrs old who has been diagnosed with a rare disease I probably can't pronounce if you told me ten times what it was called. I'm sure there are different symptoms to it but the main problem is the fact that he has literally hundreds of seizures a day and has been in the hospital more than I have in my 32 yrs being on this earth. This Friday, they will be installing something in his chest that sounds like a pacemaker in hopes of controlling the seizures and reduce the number that he has every day. If this doesn't work, they will need to basically seperate his brain down the middle.

-Rob

Rob,
It is so special the concern you have for this family!!
We went on our trip a month ago. We were actually there a month ago today. We did find that our trip went faster through a smaller orginization than my daughter's friend's did through MAW. But I'm sure it depends on where you are.

I know the device he is getting. It is called a Vagal Nerve Stimulator. My daughter has severe brain damamge which causes her epilepsy. She has had hers for 2 1/2 years now. It has been an angel for us. I will be praying for this little guy!! I believe so much in the VNS. My dr says we should be the spokes family. My daughter still has seizures but a 20 second GrandndMal works any day in my book compared to the 20 min ones of the past.

Thanks so much for caring about your friends child that much.
I hope he gets this wonderful trip. It was a week our family will never forget!!

 

[NateNLogansDad]

Renea-
Thanks for the info on the device. i'm at work right now waiting for my trailer to get loaded and should be seeing him in a few hours and I can't wait to pass that on. I'm kind of afraid to go back inside my building right now because I started reading your trip report and totally lost it when you guys got to meet sorcerer mickey. My luck, my dispatcher will want to send me down to get tested because my eyes are probably red as can be. It really looks like you've been blessed with a very sweet family and I hope to read more about them after I get off the clock tomorrow morning. Thanks so much for the reply, I'm sure that will help him get through tonight and tomorrow a little easier. I can't say it enough, but I love the people here on the disboards!!!

 

[Haybuggsmom]

Renea-
Thanks for the info on the device. i'm at work right now waiting for my trailer to get loaded and should be seeing him in a few hours and I can't wait to pass that on. I'm kind of afraid to go back inside my building right now because I started reading your trip report and totally lost it when you guys got to meet sorcerer mickey. My luck, my dispatcher will want to send me down to get tested because my eyes are probably red as can be. It really looks like you've been blessed with a very sweet family and I hope to read more about them after I get off the clock tomorrow morning. Thanks so much for the reply, I'm sure that will help him get through tonight and tomorrow a little easier. I can't say it enough, but I love the people here on the disboards!!!

If your friend wants or needs any info or support from someone who has been there with the device and seizures he can PM me or email me anytime.
haybuggsmom@hotmail.com Seizures are never easy to deal with.
Thanks for reading our story!! It was defiantely the BEST TRIP EVER!!!!
And sorry you got to the Mickey part at work!!! Hopefully no drug test for you

 

[NateNLogansDad]

Just a slight update on his sons status, I made a mistake on the date. He had the device put in today and everything went well. He is still out of it from the meds but when he comes back around they will activate the device with some kind of magnet. I missed him last night but his oldest son works at the warehouse he runs out of so I gave him the printout and he will pass it on as soon as he sees his dad again.

 

[Haybuggsmom]

Glad to hear it went well!
With Haylee they waited 2 weeks then turned it on low.
It is a neat device. It sends a signal through the vegal nerve in the neck up to the brain. It gets set to go off at certian intervals (Haylee's goes off every 30 seconds) Then when they have a seizure you have a magnet. You place the magnet over the device and it activates the device for 1 min at a little higher level. (it goes for 30 seconds when it is on automatic)
Haylees can stop a seizure in 10 seconds flat. WE THINK IT"S AMAZING!!!
I can't wait to here how it goes!!