To "Make-A-Wish" or Not

[momofjosh]

To "Make-A-Wish

Do It!!! We went on a make-a-wish vacation when my son was 17 yrs. old and fairly healthy. It was the best thing we did! The whole family went along and we had a great time! It is a wonderful memory we now have of my son's life. You have to do things while they are healthy and can enjoy them!

Kathy

 

[sweetwhite30]

To

I say do it! memories last a lifetime and sometimes it is the memories of the fun things in life that make them fight harder to live in the end... Never pass up a oppurtunity for your child with c.f to enjoy and have a happy time for memory making!

 

[sweetwhite30]

To

I say do it! memories last a lifetime and sometimes it is the memories of the fun things in life that make them fight harder to live in the end... Never pass up a oppurtunity for your child with c.f to enjoy and have a happy time for memory making!

 

[sweetwhite30]

To

I say do it! memories last a lifetime and sometimes it is the memories of the fun things in life that make them fight harder to live in the end... Never pass up a oppurtunity for your child with c.f to enjoy and have a happy time for memory making!

 

[2perfectboys]

To

I'm not a big fan of the Make A Wish foundation, but then again I guess I'm a little bitter, you guys are sound familiar, I had a person tell me to look into it for my son. I had thouhgt it was only for dying kids, but when u read their statements for qualifying u can eaisly say, Yeah,my child has a progressive life threatening disease. But then they denied us, say we was not SICK enough. I think our doctor had a little something to do, with putting the cabash on it. But they are right, we problably didn't deserve it, but it would have been nice for my son, because everyday is a gift to anyone w/ CF, even though he don't have any lung problems yet, numerous digestive issues and problems w/ Liver, some chirosis, which I am figure he will need a liver transplant before lungs. But anyway back to the point, if u read about some people that have been given wishes, because of some type of cancer, this is not fair to CF people. Not sure if I should be comparing CF to Cancer, cause cancer is bad, but there are many kinds that have over an 80-90%cure rate. Don't know of any CF that and even 1% cure rate, So I think either Make A Wish needs to only give wishes to kids that are truly dying no chance of cure or look at the whole picture of a disease.

 

[2perfectboys]

To

I'm not a big fan of the Make A Wish foundation, but then again I guess I'm a little bitter, you guys are sound familiar, I had a person tell me to look into it for my son. I had thouhgt it was only for dying kids, but when u read their statements for qualifying u can eaisly say, Yeah,my child has a progressive life threatening disease. But then they denied us, say we was not SICK enough. I think our doctor had a little something to do, with putting the cabash on it. But they are right, we problably didn't deserve it, but it would have been nice for my son, because everyday is a gift to anyone w/ CF, even though he don't have any lung problems yet, numerous digestive issues and problems w/ Liver, some chirosis, which I am figure he will need a liver transplant before lungs. But anyway back to the point, if u read about some people that have been given wishes, because of some type of cancer, this is not fair to CF people. Not sure if I should be comparing CF to Cancer, cause cancer is bad, but there are many kinds that have over an 80-90%cure rate. Don't know of any CF that and even 1% cure rate, So I think either Make A Wish needs to only give wishes to kids that are truly dying no chance of cure or look at the whole picture of a disease.

 

[2perfectboys]

To

I'm not a big fan of the Make A Wish foundation, but then again I guess I'm a little bitter, you guys are sound familiar, I had a person tell me to look into it for my son. I had thouhgt it was only for dying kids, but when u read their statements for qualifying u can eaisly say, Yeah,my child has a progressive life threatening disease. But then they denied us, say we was not SICK enough. I think our doctor had a little something to do, with putting the cabash on it. But they are right, we problably didn't deserve it, but it would have been nice for my son, because everyday is a gift to anyone w/ CF, even though he don't have any lung problems yet, numerous digestive issues and problems w/ Liver, some chirosis, which I am figure he will need a liver transplant before lungs. But anyway back to the point, if u read about some people that have been given wishes, because of some type of cancer, this is not fair to CF people. Not sure if I should be comparing CF to Cancer, cause cancer is bad, but there are many kinds that have over an 80-90%cure rate. Don't know of any CF that and even 1% cure rate, So I think either Make A Wish needs to only give wishes to kids that are truly dying no chance of cure or look at the whole picture of a disease.

 

[kybert]

To "Make-A-Wish

i hear ya 2perfectboys. make a wish foundation denied my brother of a wish and he was actually really sick at the time. only had about 3 years left. they decided to finally offer him a wish a year before he died. what bloody use is that? he had to decline because he was too sick and couldnt even get out of bed! he was absolutely shattered. i will never forgive them for that. i had a wish and it was through the starlight foundation. they were excellent and they are the only foundation in australia who you can rely on to give cf patients wishes as the make a wish foundation rarely give wishes to cf patients. in fact, ive never actually heard of make a wish giving any cfer a wish, its always been starlight. maybe its different in america?

and my advice to you cjg1233, is to do it! dont wait! he deserves it <img src="">

 

[kybert]

To "Make-A-Wish

i hear ya 2perfectboys. make a wish foundation denied my brother of a wish and he was actually really sick at the time. only had about 3 years left. they decided to finally offer him a wish a year before he died. what bloody use is that? he had to decline because he was too sick and couldnt even get out of bed! he was absolutely shattered. i will never forgive them for that. i had a wish and it was through the starlight foundation. they were excellent and they are the only foundation in australia who you can rely on to give cf patients wishes as the make a wish foundation rarely give wishes to cf patients. in fact, ive never actually heard of make a wish giving any cfer a wish, its always been starlight. maybe its different in america?

and my advice to you cjg1233, is to do it! dont wait! he deserves it <img src="">

 

[kybert]

To "Make-A-Wish

i hear ya 2perfectboys. make a wish foundation denied my brother of a wish and he was actually really sick at the time. only had about 3 years left. they decided to finally offer him a wish a year before he died. what bloody use is that? he had to decline because he was too sick and couldnt even get out of bed! he was absolutely shattered. i will never forgive them for that. i had a wish and it was through the starlight foundation. they were excellent and they are the only foundation in australia who you can rely on to give cf patients wishes as the make a wish foundation rarely give wishes to cf patients. in fact, ive never actually heard of make a wish giving any cfer a wish, its always been starlight. maybe its different in america?

and my advice to you cjg1233, is to do it! dont wait! he deserves it <img src="">

 

[2perfectboys]

To

Yeah, I think maybe years ago Make a Wish gave CFers wish, but would like to find someone to has been given one in the last year or two. I could see them doing it, if there was a child 12 or 13 waiting for a transplant and got a wish. I've heard good things about the Starlingt foundation with CFer. I guess I really don't think my son deserves one right now but your right it would be nice while they are healthy and able to enjoy it. They are not going to be able to escape CF for ever. Guess just the fact that some docs push for it and others don't, makes it seem such a joke, CF s still CF and any child with it, even mild still has it daily.

 

[2perfectboys]

To

Yeah, I think maybe years ago Make a Wish gave CFers wish, but would like to find someone to has been given one in the last year or two. I could see them doing it, if there was a child 12 or 13 waiting for a transplant and got a wish. I've heard good things about the Starlingt foundation with CFer. I guess I really don't think my son deserves one right now but your right it would be nice while they are healthy and able to enjoy it. They are not going to be able to escape CF for ever. Guess just the fact that some docs push for it and others don't, makes it seem such a joke, CF s still CF and any child with it, even mild still has it daily.

 

[2perfectboys]

To

Yeah, I think maybe years ago Make a Wish gave CFers wish, but would like to find someone to has been given one in the last year or two. I could see them doing it, if there was a child 12 or 13 waiting for a transplant and got a wish. I've heard good things about the Starlingt foundation with CFer. I guess I really don't think my son deserves one right now but your right it would be nice while they are healthy and able to enjoy it. They are not going to be able to escape CF for ever. Guess just the fact that some docs push for it and others don't, makes it seem such a joke, CF s still CF and any child with it, even mild still has it daily.

 

[jbrandonAW]

To

My trip was the only one my family has ever gotten to take. I was a 6th grader and we went to disney!!! I'll never forget it. I would do it again if I could. Do while you can HOWEVER she is very young and won't remember it. Also you can't keep the "specialness" underraps forever. I like being special lol

 

[jbrandonAW]

To

My trip was the only one my family has ever gotten to take. I was a 6th grader and we went to disney!!! I'll never forget it. I would do it again if I could. Do while you can HOWEVER she is very young and won't remember it. Also you can't keep the "specialness" underraps forever. I like being special lol

 

[jbrandonAW]

To

My trip was the only one my family has ever gotten to take. I was a 6th grader and we went to disney!!! I'll never forget it. I would do it again if I could. Do while you can HOWEVER she is very young and won't remember it. Also you can't keep the "specialness" underraps forever. I like being special lol

 

[thefrogprincess]

To "Make-A-Wish

It can be good for kids to be around others who are "different". It makes them feel less alone. That's why CF camp was so great when they still did them. Make A Wish sent me and my family to Disney Land and we never would have gotten to go without them! To this day that was the best vacation I've ever had even though it was 17 years ago!

 

[thefrogprincess]

To "Make-A-Wish

It can be good for kids to be around others who are "different". It makes them feel less alone. That's why CF camp was so great when they still did them. Make A Wish sent me and my family to Disney Land and we never would have gotten to go without them! To this day that was the best vacation I've ever had even though it was 17 years ago!

 

[thefrogprincess]

To "Make-A-Wish

It can be good for kids to be around others who are "different". It makes them feel less alone. That's why CF camp was so great when they still did them. Make A Wish sent me and my family to Disney Land and we never would have gotten to go without them! To this day that was the best vacation I've ever had even though it was 17 years ago!

 

[cfmom3]

To "Make-A-Wish

it may not be right for you right now. you have to be ok with the decision on many levles. we have three kids with cf and have received wishes for all of them-but we were all ready when we applied. hope this helps.