Thoughts on Make a Wish

[Mommafirst]

Alyssa is almost 5 and has been asking about Disney World lately. With all of our expenses, its probably unlikely that we will be able to hack a Disney trip in the forseeable future. My husband and I have discussed Make a Wish, but we have mixed feelings (as in I have one opinion and he has another).

Our CFF rep used to work for MAW. She has advised us to apply for MAW and not to wait too long. She said the Disney trip is their specialty and that its the ideal trip for a young kid with CF. She also said that the way things are going with CF research, it might not always be considered a qualifying disease and that we should apply while it is.

My husband would like us to wait so that Alyssa has more perspective with which to choose her wish. I think that if we qualify we should do the Disney thing because it would be an amazing family memory for our non-CF kids too. I feel all the kids sacrifice for this stupid disease and that they deserve a break from it too.

Although we disagree on the wish itself, one thing we agree on is that we aren't even sure if we SHOULD apply. Alyssa has a feeding tube and has had a few hospitalizations, but overall she is doing well. Other than the daily treatment regimine, she lives a pretty "normal" life. Part of me feels bad "taking" a wish for her, when there are kids even worse off out there. So I'm curious about whether you have considered MAW for your CF child (or if the CF adults got a wish at some point)? Have you had mixed emotions about it or do you have strong feelings one way or another.

 

[Mommafirst]

Alyssa is almost 5 and has been asking about Disney World lately. With all of our expenses, its probably unlikely that we will be able to hack a Disney trip in the forseeable future. My husband and I have discussed Make a Wish, but we have mixed feelings (as in I have one opinion and he has another).

Our CFF rep used to work for MAW. She has advised us to apply for MAW and not to wait too long. She said the Disney trip is their specialty and that its the ideal trip for a young kid with CF. She also said that the way things are going with CF research, it might not always be considered a qualifying disease and that we should apply while it is.

My husband would like us to wait so that Alyssa has more perspective with which to choose her wish. I think that if we qualify we should do the Disney thing because it would be an amazing family memory for our non-CF kids too. I feel all the kids sacrifice for this stupid disease and that they deserve a break from it too.

Although we disagree on the wish itself, one thing we agree on is that we aren't even sure if we SHOULD apply. Alyssa has a feeding tube and has had a few hospitalizations, but overall she is doing well. Other than the daily treatment regimine, she lives a pretty "normal" life. Part of me feels bad "taking" a wish for her, when there are kids even worse off out there. So I'm curious about whether you have considered MAW for your CF child (or if the CF adults got a wish at some point)? Have you had mixed emotions about it or do you have strong feelings one way or another.

 

[Mommafirst]

Alyssa is almost 5 and has been asking about Disney World lately. With all of our expenses, its probably unlikely that we will be able to hack a Disney trip in the forseeable future. My husband and I have discussed Make a Wish, but we have mixed feelings (as in I have one opinion and he has another).
<br />
<br />Our CFF rep used to work for MAW. She has advised us to apply for MAW and not to wait too long. She said the Disney trip is their specialty and that its the ideal trip for a young kid with CF. She also said that the way things are going with CF research, it might not always be considered a qualifying disease and that we should apply while it is.
<br />
<br />My husband would like us to wait so that Alyssa has more perspective with which to choose her wish. I think that if we qualify we should do the Disney thing because it would be an amazing family memory for our non-CF kids too. I feel all the kids sacrifice for this stupid disease and that they deserve a break from it too.
<br />
<br />Although we disagree on the wish itself, one thing we agree on is that we aren't even sure if we SHOULD apply. Alyssa has a feeding tube and has had a few hospitalizations, but overall she is doing well. Other than the daily treatment regimine, she lives a pretty "normal" life. Part of me feels bad "taking" a wish for her, when there are kids even worse off out there. So I'm curious about whether you have considered MAW for your CF child (or if the CF adults got a wish at some point)? Have you had mixed emotions about it or do you have strong feelings one way or another.

 

[mag6125]

Heather,

I went to Disney through Make A Wish when I was around 5 and at that time I was also very healthy and living a very normal life. I never had a feeding tube and at that time ivs for me were extremely rare. Part of me wishes I had done MAW when I was older so I could pick something myself, but at the sametime it was a great family trip. I wouldn't worry about feeling like you're "taking" a wish for her when she's healthy, if you think about it its probably easier to do it while she's very healthy than somewhere in the future when sure she could pick but maybe she's got more treatments/ivs/meds to deal with and have to worry about taking while on a trip. If you want another parents opinion you could always ask my dad about it the next time you see him or email him and my mom. I don't know anything about their decision about going so they might be good to talk to about it.

 

[mag6125]

Heather,

I went to Disney through Make A Wish when I was around 5 and at that time I was also very healthy and living a very normal life. I never had a feeding tube and at that time ivs for me were extremely rare. Part of me wishes I had done MAW when I was older so I could pick something myself, but at the sametime it was a great family trip. I wouldn't worry about feeling like you're "taking" a wish for her when she's healthy, if you think about it its probably easier to do it while she's very healthy than somewhere in the future when sure she could pick but maybe she's got more treatments/ivs/meds to deal with and have to worry about taking while on a trip. If you want another parents opinion you could always ask my dad about it the next time you see him or email him and my mom. I don't know anything about their decision about going so they might be good to talk to about it.

 

[mag6125]

Heather,
<br />
<br />I went to Disney through Make A Wish when I was around 5 and at that time I was also very healthy and living a very normal life. I never had a feeding tube and at that time ivs for me were extremely rare. Part of me wishes I had done MAW when I was older so I could pick something myself, but at the sametime it was a great family trip. I wouldn't worry about feeling like you're "taking" a wish for her when she's healthy, if you think about it its probably easier to do it while she's very healthy than somewhere in the future when sure she could pick but maybe she's got more treatments/ivs/meds to deal with and have to worry about taking while on a trip. If you want another parents opinion you could always ask my dad about it the next time you see him or email him and my mom. I don't know anything about their decision about going so they might be good to talk to about it.

 

[Keepercjr]

I got a wish when I was 17 and while I'm not suggesting you wait till she's that old, IMO I would wait a while. Of course a wish at any age will be a great memory for the family - but she's still quite young and healthy - you aren't in a time crunch is what I'm trying to say. It is a personal family decision but if I was in your shoes, I would give it at least a few more years so she can have more of an input and remember it better. But you have a good point about it being a qualifying disease.

As for my wish, we went to Australia for 10 days. It was amazing. My brother was going to get a shopping spree but sadly he died before he got to do it (he was very sick). You aren't taking away a wish - they will fund everyone who qualifies. It isn't a lottery or first come first serve system.

Whether you decide to do it sooner or wait a while, it will be a wonderful experience for everyone. Just remember that if you ask for it today, it won't happen tomorrow. It will probably take months. So if she is asking for Disney now, it won't happen "soon" in a 5yo time frame.

 

[Keepercjr]

I got a wish when I was 17 and while I'm not suggesting you wait till she's that old, IMO I would wait a while. Of course a wish at any age will be a great memory for the family - but she's still quite young and healthy - you aren't in a time crunch is what I'm trying to say. It is a personal family decision but if I was in your shoes, I would give it at least a few more years so she can have more of an input and remember it better. But you have a good point about it being a qualifying disease.

As for my wish, we went to Australia for 10 days. It was amazing. My brother was going to get a shopping spree but sadly he died before he got to do it (he was very sick). You aren't taking away a wish - they will fund everyone who qualifies. It isn't a lottery or first come first serve system.

Whether you decide to do it sooner or wait a while, it will be a wonderful experience for everyone. Just remember that if you ask for it today, it won't happen tomorrow. It will probably take months. So if she is asking for Disney now, it won't happen "soon" in a 5yo time frame.

 

[Keepercjr]

I got a wish when I was 17 and while I'm not suggesting you wait till she's that old, IMO I would wait a while. Of course a wish at any age will be a great memory for the family - but she's still quite young and healthy - you aren't in a time crunch is what I'm trying to say. It is a personal family decision but if I was in your shoes, I would give it at least a few more years so she can have more of an input and remember it better. But you have a good point about it being a qualifying disease.
<br />
<br />As for my wish, we went to Australia for 10 days. It was amazing. My brother was going to get a shopping spree but sadly he died before he got to do it (he was very sick). You aren't taking away a wish - they will fund everyone who qualifies. It isn't a lottery or first come first serve system.
<br />
<br />Whether you decide to do it sooner or wait a while, it will be a wonderful experience for everyone. Just remember that if you ask for it today, it won't happen tomorrow. It will probably take months. So if she is asking for Disney now, it won't happen "soon" in a 5yo time frame.

 

[JenniferRose65]

I got a wish when I was 17 as well. It was such an amazing experience and an absolute blast! I personally agree that you should wait until she's a little older so she can make it personal and can remember it as well as I remember mine. I had a very specific wish and I'm glad I was older and able to realize that it was something that I truly wanted to experience. I wouldn't take it back or exchange it for anything and it's definitely a memory I will never forget! I was also fairly healthy during the time of my wish trip...healthy enough that my dad let me leave all of my treatments and therapies behind so I could have an almost CF free wish week.

 

[JenniferRose65]

I got a wish when I was 17 as well. It was such an amazing experience and an absolute blast! I personally agree that you should wait until she's a little older so she can make it personal and can remember it as well as I remember mine. I had a very specific wish and I'm glad I was older and able to realize that it was something that I truly wanted to experience. I wouldn't take it back or exchange it for anything and it's definitely a memory I will never forget! I was also fairly healthy during the time of my wish trip...healthy enough that my dad let me leave all of my treatments and therapies behind so I could have an almost CF free wish week.

 

[JenniferRose65]

I got a wish when I was 17 as well. It was such an amazing experience and an absolute blast! I personally agree that you should wait until she's a little older so she can make it personal and can remember it as well as I remember mine. I had a very specific wish and I'm glad I was older and able to realize that it was something that I truly wanted to experience. I wouldn't take it back or exchange it for anything and it's definitely a memory I will never forget! I was also fairly healthy during the time of my wish trip...healthy enough that my dad let me leave all of my treatments and therapies behind so I could have an almost CF free wish week.

 

[minimedic304]

Heather

i wouldnt exactly listen to your cff rep about cf not qualifing as a fatal disease for make a wish. Yes kids are living longer, but not every cf kid is. The problem with make a wish is like every other foundation they are hurting financially so in time they will have to make cuts and yes I see CF being the first to go....why because cf affects a small population of children.....I would go for the trip.... yes your daughter is 5 and healthy but one bad infection and that can all change. Look into give kids the world in kissimmee, florida...i have solid connections there and can help make this trip happen for you if you want it to.

 

[minimedic304]

Heather

i wouldnt exactly listen to your cff rep about cf not qualifing as a fatal disease for make a wish. Yes kids are living longer, but not every cf kid is. The problem with make a wish is like every other foundation they are hurting financially so in time they will have to make cuts and yes I see CF being the first to go....why because cf affects a small population of children.....I would go for the trip.... yes your daughter is 5 and healthy but one bad infection and that can all change. Look into give kids the world in kissimmee, florida...i have solid connections there and can help make this trip happen for you if you want it to.

 

[minimedic304]

Heather
<br />
<br />i wouldnt exactly listen to your cff rep about cf not qualifing as a fatal disease for make a wish. Yes kids are living longer, but not every cf kid is. The problem with make a wish is like every other foundation they are hurting financially so in time they will have to make cuts and yes I see CF being the first to go....why because cf affects a small population of children.....I would go for the trip.... yes your daughter is 5 and healthy but one bad infection and that can all change. Look into give kids the world in kissimmee, florida...i have solid connections there and can help make this trip happen for you if you want it to.

 

[CFmami]

We are leaving for Disney in 2 days. My 5 year old daughter is as happy as she can be. She is counting the days. She is doing ok now, but things can change in a flash, Make a Wish representative came to our house, they made us sign papers and we had to wait several weeks until they decided to give us the trip. I personaly think is better to do it when they are doing well.

 

[CFmami]

We are leaving for Disney in 2 days. My 5 year old daughter is as happy as she can be. She is counting the days. She is doing ok now, but things can change in a flash, Make a Wish representative came to our house, they made us sign papers and we had to wait several weeks until they decided to give us the trip. I personaly think is better to do it when they are doing well.

 

[CFmami]

We are leaving for Disney in 2 days. My 5 year old daughter is as happy as she can be. She is counting the days. She is doing ok now, but things can change in a flash, Make a Wish representative came to our house, they made us sign papers and we had to wait several weeks until they decided to give us the trip. I personaly think is better to do it when they are doing well.

 

[Cherylwithone]

My 2 cents. Did anyone think to ask your daughter "Honey if you could have a wish what would it be?" She does not need to know that wishes can be granted.

Also, you never know what tomorrow might bring. You should go when she is healthy so that SHE can enjoy herself.

My boss paid for my family to go to Disney World so my daughters Make A Wish was a photo shoot with someone from NATGEO. Which she did and enjoyed.

 

[Cherylwithone]

My 2 cents. Did anyone think to ask your daughter "Honey if you could have a wish what would it be?" She does not need to know that wishes can be granted.

Also, you never know what tomorrow might bring. You should go when she is healthy so that SHE can enjoy herself.

My boss paid for my family to go to Disney World so my daughters Make A Wish was a photo shoot with someone from NATGEO. Which she did and enjoyed.