Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi , (age 18 now) did her Make-A-Wish when she was 8. She wanted to go to Walt Disney World in Orlando FL. It was a great wish and we had the best time together as a family. MAW is very good about including the healthy siblings and they go all out for the wishes. had a " going away " party with Pizza and ice cream at our house a few days before we left. She could invite anyone she wanted. On the wish day we were picked up by a limo and taken to the airport. The kids got 1st class treatment, and got to visit the cockpit (I don't know if they'd allow that in these troubled times). Like you said, getting a wish did not take it away from someone " more deserving " . At the time her doctor had to sign a release stating that there was a high likelyhood that she might not live past age 18, as I've already said is very healthy for someone with CF but we felt she deserved a wish as much as any other child who is chronically ill. Our kids go through a lot even if they are considered to have a " mild " case of CF. It in no way made her feel as if she was on her deathbed! On the contrary it made her feel special and it helped her see that having CF isn't the worst thing in the world. We stayed at the Kids Village which accomodates children and their families from all over the country from the different wish organizations. It's a wonderful place and our kids got to see other children whose disability is much more obvious. (along with the rest of our family) also got to attend Christmas parties, Halloween, and July 4th parties/bbq's etc. MAW used to take all the families to the El Toro Air Show and we got reserved seating up front, and the kids got to meet the Blue Angels pilots following the show. We also got comped tix to Knotts Berry Farm for several years, so there was more to get involved with that just the big Wish. But now she is 18 and no longer eligible for the freebies, but OF course that is a GOOD thing!! So, I'd say go for it! MAW is really a wonderful organization. I hope this helps love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi , (age 18 now) did her Make-A-Wish when she was 8. She wanted to go to Walt Disney World in Orlando FL. It was a great wish and we had the best time together as a family. MAW is very good about including the healthy siblings and they go all out for the wishes. had a " going away " party with Pizza and ice cream at our house a few days before we left. She could invite anyone she wanted. On the wish day we were picked up by a limo and taken to the airport. The kids got 1st class treatment, and got to visit the cockpit (I don't know if they'd allow that in these troubled times). Like you said, getting a wish did not take it away from someone " more deserving " . At the time her doctor had to sign a release stating that there was a high likelyhood that she might not live past age 18, as I've already said is very healthy for someone with CF but we felt she deserved a wish as much as any other child who is chronically ill. Our kids go through a lot even if they are considered to have a " mild " case of CF. It in no way made her feel as if she was on her deathbed! On the contrary it made her feel special and it helped her see that having CF isn't the worst thing in the world. We stayed at the Kids Village which accomodates children and their families from all over the country from the different wish organizations. It's a wonderful place and our kids got to see other children whose disability is much more obvious. (along with the rest of our family) also got to attend Christmas parties, Halloween, and July 4th parties/bbq's etc. MAW used to take all the families to the El Toro Air Show and we got reserved seating up front, and the kids got to meet the Blue Angels pilots following the show. We also got comped tix to Knotts Berry Farm for several years, so there was more to get involved with that just the big Wish. But now she is 18 and no longer eligible for the freebies, but OF course that is a GOOD thing!! So, I'd say go for it! MAW is really a wonderful organization. I hope this helps love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi , (age 18 now) did her Make-A-Wish when she was 8. She wanted to go to Walt Disney World in Orlando FL. It was a great wish and we had the best time together as a family. MAW is very good about including the healthy siblings and they go all out for the wishes. had a " going away " party with Pizza and ice cream at our house a few days before we left. She could invite anyone she wanted. On the wish day we were picked up by a limo and taken to the airport. The kids got 1st class treatment, and got to visit the cockpit (I don't know if they'd allow that in these troubled times). Like you said, getting a wish did not take it away from someone " more deserving " . At the time her doctor had to sign a release stating that there was a high likelyhood that she might not live past age 18, as I've already said is very healthy for someone with CF but we felt she deserved a wish as much as any other child who is chronically ill. Our kids go through a lot even if they are considered to have a " mild " case of CF. It in no way made her feel as if she was on her deathbed! On the contrary it made her feel special and it helped her see that having CF isn't the worst thing in the world. We stayed at the Kids Village which accomodates children and their families from all over the country from the different wish organizations. It's a wonderful place and our kids got to see other children whose disability is much more obvious. (along with the rest of our family) also got to attend Christmas parties, Halloween, and July 4th parties/bbq's etc. MAW used to take all the families to the El Toro Air Show and we got reserved seating up front, and the kids got to meet the Blue Angels pilots following the show. We also got comped tix to Knotts Berry Farm for several years, so there was more to get involved with that just the big Wish. But now she is 18 and no longer eligible for the freebies, but OF course that is a GOOD thing!! So, I'd say go for it! MAW is really a wonderful organization. I hope this helps love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 HI Milan, I had the same feeling about the wish for my son. He too is healthy and I felt guilty asking for a wish. I asked on this list what everyone thought and they all said I should do it. The reality is that kids with CF do have a life threatening illness. Maybe right now she is okay but we never know what the future could hold. Hopefully she will do incredibly well and never will her life be in jeopardy. But there are all the things that these kids deal with everyday that others never even think about. Why not let them have a wish when they are able to enjoy it. I was told by the foundation that every child who is eligible for a wish gets one. It is not based on financial need or degree of ill health at the time. In our county there have been 67 wishes granted and only 4 of those children have died. How wonderful that during such a difficult period in these kids lives they were able to have something so special. Hope you can convince your husband. Funny mine had to convince me. Good luck Mom to Josh 8 1/2 wcf and 3 1/2 nocf but wants to do therapy for his brother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 HI Milan, I had the same feeling about the wish for my son. He too is healthy and I felt guilty asking for a wish. I asked on this list what everyone thought and they all said I should do it. The reality is that kids with CF do have a life threatening illness. Maybe right now she is okay but we never know what the future could hold. Hopefully she will do incredibly well and never will her life be in jeopardy. But there are all the things that these kids deal with everyday that others never even think about. Why not let them have a wish when they are able to enjoy it. I was told by the foundation that every child who is eligible for a wish gets one. It is not based on financial need or degree of ill health at the time. In our county there have been 67 wishes granted and only 4 of those children have died. How wonderful that during such a difficult period in these kids lives they were able to have something so special. Hope you can convince your husband. Funny mine had to convince me. Good luck Mom to Josh 8 1/2 wcf and 3 1/2 nocf but wants to do therapy for his brother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 HI Milan, I had the same feeling about the wish for my son. He too is healthy and I felt guilty asking for a wish. I asked on this list what everyone thought and they all said I should do it. The reality is that kids with CF do have a life threatening illness. Maybe right now she is okay but we never know what the future could hold. Hopefully she will do incredibly well and never will her life be in jeopardy. But there are all the things that these kids deal with everyday that others never even think about. Why not let them have a wish when they are able to enjoy it. I was told by the foundation that every child who is eligible for a wish gets one. It is not based on financial need or degree of ill health at the time. In our county there have been 67 wishes granted and only 4 of those children have died. How wonderful that during such a difficult period in these kids lives they were able to have something so special. Hope you can convince your husband. Funny mine had to convince me. Good luck Mom to Josh 8 1/2 wcf and 3 1/2 nocf but wants to do therapy for his brother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 My husband felt the same way. I explained to him that we don't know the future and that why shouldn't the kids enjoy being treated like royalty. I have explained to the kids its because they do so many medicines and treatments. Kids with CF have so much to deal with and put up with - a lifetime of these treatments and you know what it sucks! They should get a wish and enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 My husband felt the same way. I explained to him that we don't know the future and that why shouldn't the kids enjoy being treated like royalty. I have explained to the kids its because they do so many medicines and treatments. Kids with CF have so much to deal with and put up with - a lifetime of these treatments and you know what it sucks! They should get a wish and enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 I agree about the age factor. made his wish at age 9. My daughter is doing hers now at age 12. I told Dylan (who is six that he has to wait til he he 9). You want them to be old enough to remember it yet healthy enough to enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 In a message dated 12/4/2002 6:29:19 PM Central Standard Time, macfive40@... writes: > dear lisa, > hello my name is mary coleman and i definitely have > a response for the make a wish trip.. i hope that you > do take her on that trip now and not wait until she is > sick.. we took my grandson to orlando, fl to disney > world and he was very sick and didnt have a good time > cause of how sick he was.. he passed away the day we > got back to arkansas.. that is very hard for me to > handle right now but i do have to say that yes please > do take that child on a trip to disney world or where > ever she wants to go cause she needs to enjoy it now > and not wait.. thank you .. mary mother of daniel 19 > wcf and grandmother of taloen 4 wcf {deceased}.. you go it to work!! I am glad to see you back! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 In a message dated 12/4/2002 6:29:19 PM Central Standard Time, macfive40@... writes: > dear lisa, > hello my name is mary coleman and i definitely have > a response for the make a wish trip.. i hope that you > do take her on that trip now and not wait until she is > sick.. we took my grandson to orlando, fl to disney > world and he was very sick and didnt have a good time > cause of how sick he was.. he passed away the day we > got back to arkansas.. that is very hard for me to > handle right now but i do have to say that yes please > do take that child on a trip to disney world or where > ever she wants to go cause she needs to enjoy it now > and not wait.. thank you .. mary mother of daniel 19 > wcf and grandmother of taloen 4 wcf {deceased}.. you go it to work!! I am glad to see you back! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 In a message dated 12/4/2002 6:29:19 PM Central Standard Time, macfive40@... writes: > dear lisa, > hello my name is mary coleman and i definitely have > a response for the make a wish trip.. i hope that you > do take her on that trip now and not wait until she is > sick.. we took my grandson to orlando, fl to disney > world and he was very sick and didnt have a good time > cause of how sick he was.. he passed away the day we > got back to arkansas.. that is very hard for me to > handle right now but i do have to say that yes please > do take that child on a trip to disney world or where > ever she wants to go cause she needs to enjoy it now > and not wait.. thank you .. mary mother of daniel 19 > wcf and grandmother of taloen 4 wcf {deceased}.. you go it to work!! I am glad to see you back! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Perfect timing. I visit & do some work with Give Kids the world...& generally that is the age most are.Your reasoning is the one almost all folks give. Your on top of it gal, as always. have a great time with this time around. Call if I can do anything Oh, I meant to ask you. How are you doing with the different doc since our special doc having retired.? I hope well , no one can replace him , but their are some good ones about . LOVE & HUGS, grandmomBEv Re: Make a Wish HELP I agree about the age factor. made his wish at age 9. My daughter is doing hers now at age 12. I told Dylan (who is six that he has to wait til he he 9). You want them to be old enough to remember it yet healthy enough to enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Perfect timing. I visit & do some work with Give Kids the world...& generally that is the age most are.Your reasoning is the one almost all folks give. Your on top of it gal, as always. have a great time with this time around. Call if I can do anything Oh, I meant to ask you. How are you doing with the different doc since our special doc having retired.? I hope well , no one can replace him , but their are some good ones about . LOVE & HUGS, grandmomBEv Re: Make a Wish HELP I agree about the age factor. made his wish at age 9. My daughter is doing hers now at age 12. I told Dylan (who is six that he has to wait til he he 9). You want them to be old enough to remember it yet healthy enough to enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Perfect timing. I visit & do some work with Give Kids the world...& generally that is the age most are.Your reasoning is the one almost all folks give. Your on top of it gal, as always. have a great time with this time around. Call if I can do anything Oh, I meant to ask you. How are you doing with the different doc since our special doc having retired.? I hope well , no one can replace him , but their are some good ones about . LOVE & HUGS, grandmomBEv Re: Make a Wish HELP I agree about the age factor. made his wish at age 9. My daughter is doing hers now at age 12. I told Dylan (who is six that he has to wait til he he 9). You want them to be old enough to remember it yet healthy enough to enjoy it! Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 In a message dated 12/4/2002 10:52:01 AM Central Standard Time, jenkinspatriciaa@... writes: > I do have a question for the masses: Presley can control her " bowels " and > her control of " air " , but my 4 year old Dylan is short gut, and is a little > more " windy " than Presley, and his bowel movements, I'm sorry, really > really smell really really bad. I am having trouble thinking of sending > him to school. Are there any other parents out there that home school > their children because of this issue? I can just see and hear the mean > children at school that just happen to walk into the bathroom on one of his > many unscheduled runs! I think he needs to have more enzymes. I would take it over with your doctor. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 In a message dated 12/4/2002 10:52:01 AM Central Standard Time, jenkinspatriciaa@... writes: > I do have a question for the masses: Presley can control her " bowels " and > her control of " air " , but my 4 year old Dylan is short gut, and is a little > more " windy " than Presley, and his bowel movements, I'm sorry, really > really smell really really bad. I am having trouble thinking of sending > him to school. Are there any other parents out there that home school > their children because of this issue? I can just see and hear the mean > children at school that just happen to walk into the bathroom on one of his > many unscheduled runs! I think he needs to have more enzymes. I would take it over with your doctor. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 In a message dated 12/4/2002 10:52:01 AM Central Standard Time, jenkinspatriciaa@... writes: > I do have a question for the masses: Presley can control her " bowels " and > her control of " air " , but my 4 year old Dylan is short gut, and is a little > more " windy " than Presley, and his bowel movements, I'm sorry, really > really smell really really bad. I am having trouble thinking of sending > him to school. Are there any other parents out there that home school > their children because of this issue? I can just see and hear the mean > children at school that just happen to walk into the bathroom on one of his > many unscheduled runs! I think he needs to have more enzymes. I would take it over with your doctor. Deb A Quote Link to comment Share on other sites More sharing options...
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