Make A Wish

[Barb]

I am working with Make A Wish on a social media campaign (you know that weird blogging, tweeting thing I do to pay my bills) but did you all know that most people with SB qualify? I have always thought of MAW as working with terminal situations but they have expanded their net quite a bit in the last few years. :clap2:

[LillyPie]

I actually referred Lilly last week, have not heard anything back yet but, maybe. Hopefully.

[gms]

I thought it was only for termanilly ill people, thanks for letting us know it has expanded!

[Dodger67]

I'm opposed to expanding it beyond the genuinely dying.

We who live normal everyday lives with disabilities do not need pity!
Pity actually is a severe impediment to the advancement of the social/economic/political/human rights of disabled people.

[eng188]

Meh. I don't know what I feel about it. MAW isn't for me. Partially bc I don't think I'm entitled to anything special just bc I have SB, and partially bc there's just nothing beyond my means that I feel a need to do in life.

But there's many ways to debate MAW, and they do great things.

[Lifeisgood]

The way I have understood it is that they grant wishes to kids with life threatening situations. Life threatening situations does not always mean terminal. Perhaps kids with SB may qualify if they have severe shunt or kidney issues? It would be interesting to see more about who qualifies. Personally, I think it is cool that they have come to a place where they can now expand their net and grant wishes to more kids. I would imagine / hope they have quite a screening process to make sure it is not abused.

[jellolegs23]

Agrees with Dodger

[Barb]

When we were approached years ago and asked to apply my first reaction is that C is not terminal. I also felt like we could afford many things and it wouldnt be right to take someone elses spot.

But then I got the chance to really get to know the MAW team and what they are about and totally changed my mind

They want to be able to give a wonderful experience to not only the kids but to their families. They want to take the stress off the parents of always having to be everything all the time. They do such normal things like plan a birthday party (which takes enormous stress off the overloaded parents) to the extreme but they really, truly want the wish to be something that relieves the daily pressures we parents face as well.

And yes, SB and hydro qualifies. They grant wishes for life threatening conditions of which most of us on the board live with.

I don't see it as pity at all. I see it as a karmic kindness.

[Dodger67]

Barb I don't have a problem with them doing that - the problem is the image they put out to the general public about their clientele:

"Look how wonderful we are, we're giving this amazing gift to this poor suffering little cripple". Pan to shot of pathetic cripple smiling - probably for the first and last time in his miserable short life.

I'm not saying that its intentional, thats just the way it looks to the general public who have no idea about their real criteria and motives.

[Papillon]

Have wondered that for a while, since someone I know was granted a wish by them, and that person has SB, not a terminal illness. It's not pity, in my opinion - it's giving people who otherwise could not manage it the opportunity to experience something that they will really enjoy and treasure the memory of forever.

[Summer25]

When I was 12 I got the opportunity to put in an application for what was then the Starlight Foundation. I had gone through about 15 surgeries in one year and my nurses and doctor thought it would be a good thing. I was 16 when the wish went through because of several failed ones that never went through, but let me tell you it was the best thing ever in the eyes of a 16 year old. Even though my brother lived in NY I never got the chance to go until then. My wish was actually to go to the MTV Music awards. Going to NY was just an added bonus. They put us in a gorgeous hotel that was just a block from where most of th celebrities were staying. You literally could look out the window and look to see who was coming out of the other hotel. I think I spent more time outside of the other hotel then in ours...lol. At the awards I don't think I had ever been that excited. I was surrounded by people that I grew up with and absolutely idolized. Site seeing around NY is the most fun anyone can have. I also got to see the twin towers exactly one year before the attack. I know I'll never forget that experience or never will experience it again. I don't see a problem in it at all. If a child wants to do something and they can't, but they have the opportunity, go for it! That child will have those memories for their whole life and when something happens they can look back and know that they got to do something they wanted to do. If only for one week it took my mind off of everything that I had going on at home and let me do what I wanted. I met so many awesome people during that week that I'll never forget. It is a once in a life time thing. You shouldn't feel that it is pity. It isn't at all. It is giving that child a chance of a lifetime. It is giving that child a chance for just a little bit to forget about what they have and what goes on at home.

[Barb]

That is so awesome Summer. I hope lots of the kids here will get opportunities like that through me spreading the word.

Dodger, I totally get that perception and that is a lot of what I am hoping to change. Make A Wish is much more than that and they know it. They want others too as well.

[NerdaliciouS]

Yeah, I thought they only did it for like... Terminal.
Parents do deserve a break, I just thought it was all for them. I'd feel really bad taking something away from someone who deserved it more, though.
Counselor brought something like this up to me, but I couldn't do it. I'll just have to find a job and save and go to Disneyland when I'm 30 to meet Goofy. xD ...Or go anywhere really, lol.

[LillyPie]

MAW called me back today in fact. They explained to me that there is a huge misconception about MAW, a lot of people beleive that it is for terminal patients, I explained to her that I don't look at Lilly as "terminal". She is faxing some forms to Lillys Dr. She informed me thats its really up to the Dr to determine if she is elegible or not.

IDK where I stand on all of this. I see both sides of the story, but this is for Lilly. This could be something my husband and I would never be able to do for her.

[Lifeisgood]

Go for it. :) Absolutely go for it. Make the memories and cherish it. What is Lilly's wish?

[LillyPie]

IDK. She has said a couple things. She said she wants to go surfing one minute, then meet Hannah Montana the next minute, next hour its all about Disney World. IDK what she really wants, she changes her mind every hour..... Its her wish and I want her to get whatever her heart desires.....
"if" she gets to make a wish we would probably wait until after whatever happens with this MRI and whatever the DRs say should be done about the tethering issue. It would probably lift her spirits to do it after surgery. My mothers instinct says she will have to have the TC released. :(

[Lifeisgood]

I hope she gets her wish! Keep us posted on all fronts, the wish and the TC.

[Mom2Ty]

Ty was granted a Wish from the MAW foundation. We just got back from his Disney trip on Friday. His dr was the one who determined his elegibility. None of his diagnosis is considered "terminal" but are life threatening. We think it is a wonderful organization. Ty had an amazing time and is still on cloud 9. The things we got to do on that trip is things we would not otherwise be able to do. And the family memories were endless.

[LillyPie]

Thats awesome mom2ty! I am glad you were able to make those memories. How was the trip? How long did you stay? Disneyland or Disneyworld? How long from the time that your DR got the forms to the time you went to Disney? I have not heard anything back yet, just waiting on the Dr to reply back. I am very happy for you and Ty :)

[bcain]

Summer, I loved reading your post. I could still feel the excitement in your words... just great. Thanks for sharing that.

[Summer25]

Summer, I loved reading your post. I could still feel the excitement in your words... just great. Thanks for sharing that.

Hehe thanks! I actually was going through the pictures this week trying to find another picture I have somewhere. It just brought back all the memories too. I'm so glad I got to do something like that. It really is a once in a lifetime thing.

[Barb]

I'd feel really bad taking something away from someone who deserved it more, though.


I had that thought as well but in talking with them I have found that almost 40% of their wishes are Disney related. There is an actual hotel set up just for wish families that has everything one could ever want. I believe families staying at that in Orlando have tickets to Disney, Sea World and Universal. It is my understanding that those organizations comp mostly all of the trip which is a huge tax break to these mega corps. You aren't taking anything from anyone. The reality is you are giving Disney a tax break :11a:But you have to be under 18 to have a wish granted through MAW

[Mom2Ty]

Thats awesome mom2ty! I am glad you were able to make those memories. How was the trip? How long did you stay? Disneyland or Disneyworld? How long from the time that your DR got the forms to the time you went to Disney? I have not heard anything back yet, just waiting on the Dr to reply back. I am very happy for you and Ty :)

Thank you:) It took about 4mos for us for the original date we were to go but we had to cancel due to my fil being ill. We were supposed to in Feb. But we rescheduled to last week. It will depend on your MAW chapter and also the dates you would like to go.We went to Disney World as there is so many parks there. I highly recommend October or November. October has some pretty neat Halloween things and November you can see the Christmas stuff without the crowds. I do NOT recommend going from June -August it is just too hot as we found out. The trip was amazing. We did so much. The parks were great with him. We went to Universal Studios, Sea World, Animal Kingdom, Magic Kingdom, Epcot and Disney Hollywood Stuidos. We stayed 6nights 7 days at Give Kids the World. There is so much to do at GKTW too. Ty said he left his "soul" at GKTW. To see the smiles on his face was everything.

[Barb]

Thats awesome. GKTW is Carts second choice if a cruise isnt doable. Why don't we make a wish kids thread where parents can ask ?'s of other parents who have gone through this....off to do that now

[Mom2Ty]

I would be glad to help.

[angel]

I have had experience with MAW as my best friend's daughter was granted a disney vacation. She does not have SB she had end stage renal failure when she was 7 years old. My friend gave her daugher a kidney and I am happy to say that she is doing quite well almost 10 years later. Her trip was after the transplant. It was a wonderful thing for her.
Most people don't know of the changes i would bet that the majority of the public still think it is only for terminally ill children. I didn't know about them. If handled properly, as it always has seemed to be, and doesn't show the children in a helpless, negative or needy light then i think it is ok. There are many children with disabilities who don't get to experience the kind of life that many of us have. I am talking about children not adults as i believe as an adult you take charge of your own situation. There are kids with SB that i know personally who, outside of school, almost never go anywhere except on the shriners trips we do every summer. That is the main focus of doing them to get the kids together and to have a fun, which is an opertunity they otherwise would not get.

Angel

[NerdaliciouS]

I had that thought as well but in talking with them I have found that almost 40% of their wishes are Disney related. There is an actual hotel set up just for wish families that has everything one could ever want. I believe families staying at that in Orlando have tickets to Disney, Sea World and Universal. It is my understanding that those organizations comp mostly all of the trip which is a huge tax break to these mega corps. You aren't taking anything from anyone. The reality is you are giving Disney a tax break :11a:But you have to be under 18 to have a wish granted through MAW

No one ever knew this years ago. I would've loved to be able to go. Was always told we would, then with life being... very life-like, never got to. So now I just imagine things in my head, haha. That sounds pretty lame, but I just don't go places or do anything. That's life.

I think they should make it known that it isn't just for terminally ill children, though. The way they're shown everywhere is exactly that. Then there's people like us (er, with SB), and we're usually the ones who slip through the cracks, WITH EVERYTHING. Because it's either not severe enough or what have you.

Oh well. It's nice to know now, though. :) I hope tons of kids can enjoy something they wish for!:D

[LillyPie]

On the MAW of NM page they have pictures of regular kids that have made wishes. All the pictures of the kids that have made wishes look like regular pictures. I dont get the sense that they are trying to portray the pictures as "Oh poor little dying kid" from ANY of the pictures. There really is a misconception about MAW.

[NerdaliciouS]

Commercials etc. make it seem like that.

I've never been to the site until recently.

[Barb]

This thread makes me smile because my only goal is to let parents know it exists, your sb kid most likely will qualify and it is a resource at your disposal. You can decide from there if you are comfortable getting involved. Telling our families experience with it is meant to take away some of the misconceptions surrounding MAW. I can tell you from my personal interactions with heads of MAW have been very positive. I would never lend my voice to something I personally felt was casting a bad light. But that is MY opinion and we are all entitled to one and a big :happy065:

[bea22]

hello, i just want to ask if its this MAW only available in the US area only? thanks...

[NerdaliciouS]

hello, i just want to ask if its this MAW only available in the US area only? thanks...

Where are you? I'm pretty sure they're international.

[Dodger67]

There are similar organisations in other countries too.
Here in South Africa we have "Reach for a Dream". I'm not sure how wide or narrow their qualifying criteria are though.
They pop up in the news occasionally when they arrange a helicopter flight or a meeting with a pop star for a kid with cancer.

[Melz]

When I was 12 I got the opportunity to put in an application for what was then the Starlight Foundation.

I got approached by them in 2005 during a hospital visit. They gave me a new computer, printer and some autographs from a few celebrities I liked. I needed the computer for school, so it was a "practical" wish.

If Kylie Minogue hadn't just been diagnosed with cancer around the time, I would have probably asked to meet her.

Sorry to bump the thread btw.