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Make A Wish
- Thread starter Seana30
- Start date
3timesthefun
New member
When my son was in the hospital last month someone recommended to me that we try and get a wish. My doctor was all for it and did all of the necessary paperwork. I just got a letter today from Make A Wish saying they would be in contact soon to set up an interview. I was hesitant for a long time about this, but I finally figured life is short. Our children go through so much, cf and non cf related they deserve something like this. And why not let them do it when they are semi healthy, so they can enjoy it to the fullest. You never know what tomorrow may bring. We will see if they get their wish granted. I figured we could just do one wish for the three of them, not sure how it works.
G/22/cf, do you even know how cf 'works'? seems you dont. perhaps you arent too experienced. the whole point of getting a wish when you are healthy is so you can enjoy it. if you wait until you are really sick, you will not enjoy it one bit. and as alot of people know cf patients health can change VERY quickly so its not like you are in the clear and dont have a care in the world. you might be in great condition, get your wish, then 2 years down the track get very sick. if you were in that situation wouldnt you be glad that you got your wish when well? and healthy or not, you still have cf and it still sucks. you sound a bit jealous to me actually...
Actually Kybert I am not in 'great condition' as you put it. My fev1 is 39% at its best. As for jealously, what on earth have I to be jealous about???<img src="i/expressions/face-icon-small-confused.gif" border="0"> I have been through a heck of a lot with my condition, so for you to say "do you even know how cf works?It seems you don't'' is rather insulting to say the least. I am just not a big fan of taking handouts, and in some cases that is how I see it.
I don't think you have to be on your deathbed to get your wish by any means. But I know of several cases where people have cf, who have to do nebulizers and physio twice a day, (and thats it) take a few tablets, but apart from that they lead perfectly healthy lives and are able to compete with their peers with little to no problems. It is <b>these</b> people who applying for a wish just seem to be taking advantage of the system. I can't recall who it was that said they had an fev1 of 100% and got a wish! Thats incredible, there are 'normal healthy' people out there who would have less of a lung function then that.
I don't think you have to be on your deathbed to get your wish by any means. But I know of several cases where people have cf, who have to do nebulizers and physio twice a day, (and thats it) take a few tablets, but apart from that they lead perfectly healthy lives and are able to compete with their peers with little to no problems. It is <b>these</b> people who applying for a wish just seem to be taking advantage of the system. I can't recall who it was that said they had an fev1 of 100% and got a wish! Thats incredible, there are 'normal healthy' people out there who would have less of a lung function then that.
since when did i say you were in great condition? if you think inexperienced means healthy then think again. i have met plenty of moderate to severe cf people who are very inexperienced and ignorant about cf. so you say you arent jealous. well, how do you explain your obvious problem with healthy cfers? seems like you have a bone to pick with them. you are practically saying that if you have mild cf you dont have cf at all. i can tell you now they work hard just like the rest of us. having a high fev1 does not mean they can sit back and relax. if you dont want to take 'handouts', even though they are not handouts but are gifts that are willingly given, fine. but dont you dare make anyone here feel bad for having/asking for a wish. being an fev1 snob wont get you far on this board...
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
But I know of several cases where people have cf, who have to do nebulizers and physio twice a day, (and thats it) take a few tablets, but apart from that they lead perfectly healthy lives and are able to compete with their peers with little to no problems. It is <b>these</b> people who applying for a wish just seem to be taking advantage of the system. I can't recall who it was that said they had an fev1 of 100% and got a wish! Thats incredible, there are 'normal healthy' people out there who would have less of a lung function then that.</end quote></div>
I'm one of those people. When I got my wish granted I had an FEV1 of 100%, I wasn't doing nebs, and was only taking a handful of pills. I was in no way "taking advantage of the system", and that fact that you are grouping us into that category is insulting to me. FYI - my mother didn't approach the Make a Wish Foundation. They approached her. They informed us that they were granting wishes for terminally ill patients, and were granting wishes to people who were realitivly healthy so that they could enjoy their wish. Who wants to go to Disney World and trying to have fun when you're carting around an oxygen tank. etc. So no, I was not taking advantage of the system. They approached me.
But I know of several cases where people have cf, who have to do nebulizers and physio twice a day, (and thats it) take a few tablets, but apart from that they lead perfectly healthy lives and are able to compete with their peers with little to no problems. It is <b>these</b> people who applying for a wish just seem to be taking advantage of the system. I can't recall who it was that said they had an fev1 of 100% and got a wish! Thats incredible, there are 'normal healthy' people out there who would have less of a lung function then that.</end quote></div>
I'm one of those people. When I got my wish granted I had an FEV1 of 100%, I wasn't doing nebs, and was only taking a handful of pills. I was in no way "taking advantage of the system", and that fact that you are grouping us into that category is insulting to me. FYI - my mother didn't approach the Make a Wish Foundation. They approached her. They informed us that they were granting wishes for terminally ill patients, and were granting wishes to people who were realitivly healthy so that they could enjoy their wish. Who wants to go to Disney World and trying to have fun when you're carting around an oxygen tank. etc. So no, I was not taking advantage of the system. They approached me.
Ok, I may have been a little harsh earlier in my post, but I want to clarify a few things. 1) I am not hiding behind an 'anonymous' name, I just haven't registered, I always leave my initial and age at the bottom of my posts.
2) I am certainly <b>not</b> jealous of anyone here, or anything for that matter. I have a fantastic life, family and friends and I wouldn't change that for anything. I have also had a 'comfortable' upbringing so I have been fortunate. In fact if given the opportunity to take away my cf, but be given a different life, I would refuse it in a heartbeat.
3) I remember when I was younger, I had to do physio and nebs twice a day and take tablets. Maybe its just the way I was, but I didn't find that difficult, maybe a bit of a nuisance at times but not difficult. I really saw myself no different from anybody else. I suppose everybody is different...
Finally, you are all entitled to your opinions. I'm just aware of how hard make-a-wish works to fundraise to pay for all the trips and treats, and I would hate to take advantage of that. I'm not (and never) said that if you have cf, you shouldn't get a wish, but I just stated that in SOME cases people were taking advantage of it. I knew of kids with cf when I was younger, who were not very well off, but they were very healthy, and they would never have had the oppertunity to go to disney or anywhere on vacation, if it were not for their cf and make a wish. So that was special for them. Please don't take me up the wrong way, I am entitled to my opinion just as you are all entitled to yours.
G/22/cf
2) I am certainly <b>not</b> jealous of anyone here, or anything for that matter. I have a fantastic life, family and friends and I wouldn't change that for anything. I have also had a 'comfortable' upbringing so I have been fortunate. In fact if given the opportunity to take away my cf, but be given a different life, I would refuse it in a heartbeat.
3) I remember when I was younger, I had to do physio and nebs twice a day and take tablets. Maybe its just the way I was, but I didn't find that difficult, maybe a bit of a nuisance at times but not difficult. I really saw myself no different from anybody else. I suppose everybody is different...
Finally, you are all entitled to your opinions. I'm just aware of how hard make-a-wish works to fundraise to pay for all the trips and treats, and I would hate to take advantage of that. I'm not (and never) said that if you have cf, you shouldn't get a wish, but I just stated that in SOME cases people were taking advantage of it. I knew of kids with cf when I was younger, who were not very well off, but they were very healthy, and they would never have had the oppertunity to go to disney or anywhere on vacation, if it were not for their cf and make a wish. So that was special for them. Please don't take me up the wrong way, I am entitled to my opinion just as you are all entitled to yours.
G/22/cf
G,
The only problem I have with your posts is this..................
If Make A Wish says that the child qualifies for the trip......then how is that taking advantage. From what I understand, and I could be wrong, MAW talks with the doctors first to see if they qualify.
If MAW says "yes, we want to grant you a wish" how is that taking advantage of them???????
Seana
The only problem I have with your posts is this..................
If Make A Wish says that the child qualifies for the trip......then how is that taking advantage. From what I understand, and I could be wrong, MAW talks with the doctors first to see if they qualify.
If MAW says "yes, we want to grant you a wish" how is that taking advantage of them???????
Seana
S
skh
Guest
How interesting. At Abby's last cf visit her doctor discussed Make A Wish with us. Her dad and I didn't feel comfortable - I think because of the reasons mentioned above - she's very health; by even thinking about doing this would we be saying she is getting worse etc. By the look on Abby's face I knew she was thinking the same as us. So, we told the doc thank you but no thanks. We really didn't/don't know much about the Make A Wish foundation. Now, after reading this post I am wondering, did we act irrationally? Should we have not responded the way we did? Who are we to decide if Abby should have this or not? I think I may talk to Abby about this and see what she thinks. I know after her appointment she did share with me that when her doc brought it up all she could think of was "I'm doing good, aren't I". So, maybe we need to be educated on this. I am glad this was brought up and thanks to everyone who has shared.
K
Kaitsmom
Guest
Kait was granted her wish as well but it was through the Earth Angel Foundation, I kinda felt the same way because at the time they were also interviewing another family with CF. My daughter's PFT's are in the 100's also, now i didn't feel bad about that, i just didn't know if maybe the other child was worse. I do not feel that anyone that gets their wish granted is taking advantage of anything, CF is a very hard disease and i know what my daughter has gone through in her short little life and i think that she or anyone else with a disease deserves alot more than they get at times. Kait works very hard to keep her PFT's up and her lungs clear and we all know that tomorrow she can be right back in the hospital or home with IV's. My husband and i are not selfish people but we also know that in order for us to take our child to Disney ( Kaits wish ) we would probably have to take a second mortgage on our home. When we received the call that Kaits wish was granted, she was so excited and i was for her but i had one question and that was " what about the other child" When they told me that his wish was granted as well than i knew that it was the right thing to do.
The look on your childs face is PRICELESS
P.S. Kait was happy but it broke my heart when she told her friends that if she could give the trip back and not have CF than she would.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
The look on your childs face is PRICELESS
P.S. Kait was happy but it broke my heart when she told her friends that if she could give the trip back and not have CF than she would.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
The wish organizations have HUGE amounts of money to disperse. You qualify if you have a life-threatening illness. Its a personal decision whether or not to take advantage of this program. I want to give you a quote from a friend's CF nurse about this subject:
"In my opinion, the cancer kids get everything, all the photo-ops, all the special programs etc. and many of them recover after they get their wish. CF kids don't".
Please don't take this as a slam against kids with cancer. Its just an observation.
Jane
"In my opinion, the cancer kids get everything, all the photo-ops, all the special programs etc. and many of them recover after they get their wish. CF kids don't".
Please don't take this as a slam against kids with cancer. Its just an observation.
Jane
When my son was 17(4 yrs ago) he was granted a make-a-wish trip. His doctor approached us about it. We went to Disney world for 3 days and on the Disney Cruise for 4 days. We had other family members pay their own way and made it a huge family vacation. Josh was a lot healthier then and I am so glad he got the chance to go when he was healthier and could enjoy it. (AND HE DID!!!) He has now passed away and we are all so happy for the wonderful memories make-a-wish gave us!! Anyone who has the chance should go while they are healthy enough to enjoyit. I know several people who were granted a wish but were so sick they really couldn't enjoy it. Having CF is a very hard life and I don't think anyone should feel guilty or feel they are not sick enough for a wish.
momofjosh
momofjosh
falloutboygurl16
New member
What is the link to the make a wish foundation?