Make a Wish

jennylivingston · Feb 18, 2010

My sister and I both had wishes granted (her: a room makeover, me: a horse) and both of our lung functions were in the 90's.

Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

jennylivingston · Feb 18, 2010

My sister and I both had wishes granted (her: a room makeover, me: a horse) and both of our lung functions were in the 90's.

Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

jennylivingston · Feb 18, 2010

My sister and I both had wishes granted (her: a room makeover, me: a horse) and both of our lung functions were in the 90's.

Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

jennylivingston · Feb 18, 2010

My sister and I both had wishes granted (her: a room makeover, me: a horse) and both of our lung functions were in the 90's.

Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

jennylivingston · Feb 18, 2010

My sister and I both had wishes granted (her: a room makeover, me: a horse) and both of our lung functions were in the 90's.
 
 Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

Liza · Feb 18, 2010

I wonder if for some stupid reason it might have to do with the state you are in.

When Anna had hers we were in Nebraska, she was 16 and I think her pft's were in the 60's. Rachel had hers last Dec. in Texas, her pft's were in the low 70's. We opted to wait for them to make their wishes until they were older for several reasons. When the social worker asked us if the girls ever had a wish granted she was the one who told us that it didn't matter how sick or not sick a CF'er was because it was a life threatening disease and Make a Wish didn't require them to be "sick". That they need to be well enough to enjoy their wish.

When we spoke with MAW in NE, they told us their limitations, like no out of the country trips (this was spring 2003 and safety was a concern)but by the time Rachel had hers and it was done through TX, they had no limitations, her wish was to visit Australia.

I would check again. Good luck and I hope your son gets his wish.

Liza · Feb 18, 2010

I wonder if for some stupid reason it might have to do with the state you are in.

When Anna had hers we were in Nebraska, she was 16 and I think her pft's were in the 60's. Rachel had hers last Dec. in Texas, her pft's were in the low 70's. We opted to wait for them to make their wishes until they were older for several reasons. When the social worker asked us if the girls ever had a wish granted she was the one who told us that it didn't matter how sick or not sick a CF'er was because it was a life threatening disease and Make a Wish didn't require them to be "sick". That they need to be well enough to enjoy their wish.

When we spoke with MAW in NE, they told us their limitations, like no out of the country trips (this was spring 2003 and safety was a concern)but by the time Rachel had hers and it was done through TX, they had no limitations, her wish was to visit Australia.

I would check again. Good luck and I hope your son gets his wish.

Liza · Feb 18, 2010

I wonder if for some stupid reason it might have to do with the state you are in.

When Anna had hers we were in Nebraska, she was 16 and I think her pft's were in the 60's. Rachel had hers last Dec. in Texas, her pft's were in the low 70's. We opted to wait for them to make their wishes until they were older for several reasons. When the social worker asked us if the girls ever had a wish granted she was the one who told us that it didn't matter how sick or not sick a CF'er was because it was a life threatening disease and Make a Wish didn't require them to be "sick". That they need to be well enough to enjoy their wish.

When we spoke with MAW in NE, they told us their limitations, like no out of the country trips (this was spring 2003 and safety was a concern)but by the time Rachel had hers and it was done through TX, they had no limitations, her wish was to visit Australia.

I would check again. Good luck and I hope your son gets his wish.

Liza · Feb 18, 2010

I wonder if for some stupid reason it might have to do with the state you are in.

When Anna had hers we were in Nebraska, she was 16 and I think her pft's were in the 60's. Rachel had hers last Dec. in Texas, her pft's were in the low 70's. We opted to wait for them to make their wishes until they were older for several reasons. When the social worker asked us if the girls ever had a wish granted she was the one who told us that it didn't matter how sick or not sick a CF'er was because it was a life threatening disease and Make a Wish didn't require them to be "sick". That they need to be well enough to enjoy their wish.

When we spoke with MAW in NE, they told us their limitations, like no out of the country trips (this was spring 2003 and safety was a concern)but by the time Rachel had hers and it was done through TX, they had no limitations, her wish was to visit Australia.

I would check again. Good luck and I hope your son gets his wish.

Liza · Feb 18, 2010

I wonder if for some stupid reason it might have to do with the state you are in.
 
 When Anna had hers we were in Nebraska, she was 16 and I think her pft's were in the 60's. Rachel had hers last Dec. in Texas, her pft's were in the low 70's. We opted to wait for them to make their wishes until they were older for several reasons. When the social worker asked us if the girls ever had a wish granted she was the one who told us that it didn't matter how sick or not sick a CF'er was because it was a life threatening disease and Make a Wish didn't require them to be "sick". That they need to be well enough to enjoy their wish.
 
 When we spoke with MAW in NE, they told us their limitations, like no out of the country trips (this was spring 2003 and safety was a concern)but by the time Rachel had hers and it was done through TX, they had no limitations, her wish was to visit Australia.
 
 I would check again. Good luck and I hope your son gets his wish.

beansmom · Feb 19, 2010

Thanks everyone for the input. Liza I do wonder if it is our local area. We checked their site and they have only granted wishes for kids with cancer. Our doctor actually put in the wish request for us and Make a Wish contacted her and told her that they do not grant wishes for CF unless they need a transplant. They sent her the criteria they follow. The doctor says she argued with them but they would not consider our son at all. The doctor is the one who suggested we do our wish now so our son was healthy enough to enjoy it and did argue that with the person at MAW

Jane I totally agree with you about the kids with cancer in remission. That has been bugging us too. All of the kids on the MAW website in our area were in remission. WE have had some other issues with CF not "counting" as a serious disease. WE live 3 hours from our care center and were told when our son was in the PICU for 3 weeks that we could not stay at the Ronald McDonald house because CF is not as expensive or as serious as Cancer. Bugged us a lot.

beansmom · Feb 19, 2010

Thanks everyone for the input. Liza I do wonder if it is our local area. We checked their site and they have only granted wishes for kids with cancer. Our doctor actually put in the wish request for us and Make a Wish contacted her and told her that they do not grant wishes for CF unless they need a transplant. They sent her the criteria they follow. The doctor says she argued with them but they would not consider our son at all. The doctor is the one who suggested we do our wish now so our son was healthy enough to enjoy it and did argue that with the person at MAW

Jane I totally agree with you about the kids with cancer in remission. That has been bugging us too. All of the kids on the MAW website in our area were in remission. WE have had some other issues with CF not "counting" as a serious disease. WE live 3 hours from our care center and were told when our son was in the PICU for 3 weeks that we could not stay at the Ronald McDonald house because CF is not as expensive or as serious as Cancer. Bugged us a lot.

beansmom · Feb 19, 2010

Thanks everyone for the input. Liza I do wonder if it is our local area. We checked their site and they have only granted wishes for kids with cancer. Our doctor actually put in the wish request for us and Make a Wish contacted her and told her that they do not grant wishes for CF unless they need a transplant. They sent her the criteria they follow. The doctor says she argued with them but they would not consider our son at all. The doctor is the one who suggested we do our wish now so our son was healthy enough to enjoy it and did argue that with the person at MAW

Jane I totally agree with you about the kids with cancer in remission. That has been bugging us too. All of the kids on the MAW website in our area were in remission. WE have had some other issues with CF not "counting" as a serious disease. WE live 3 hours from our care center and were told when our son was in the PICU for 3 weeks that we could not stay at the Ronald McDonald house because CF is not as expensive or as serious as Cancer. Bugged us a lot.

beansmom · Feb 19, 2010

Thanks everyone for the input. Liza I do wonder if it is our local area. We checked their site and they have only granted wishes for kids with cancer. Our doctor actually put in the wish request for us and Make a Wish contacted her and told her that they do not grant wishes for CF unless they need a transplant. They sent her the criteria they follow. The doctor says she argued with them but they would not consider our son at all. The doctor is the one who suggested we do our wish now so our son was healthy enough to enjoy it and did argue that with the person at MAW

Jane I totally agree with you about the kids with cancer in remission. That has been bugging us too. All of the kids on the MAW website in our area were in remission. WE have had some other issues with CF not "counting" as a serious disease. WE live 3 hours from our care center and were told when our son was in the PICU for 3 weeks that we could not stay at the Ronald McDonald house because CF is not as expensive or as serious as Cancer. Bugged us a lot.

beansmom · Feb 19, 2010

Thanks everyone for the input. Liza I do wonder if it is our local area. We checked their site and they have only granted wishes for kids with cancer. Our doctor actually put in the wish request for us and Make a Wish contacted her and told her that they do not grant wishes for CF unless they need a transplant. They sent her the criteria they follow. The doctor says she argued with them but they would not consider our son at all. The doctor is the one who suggested we do our wish now so our son was healthy enough to enjoy it and did argue that with the person at MAW
 
 Jane I totally agree with you about the kids with cancer in remission. That has been bugging us too. All of the kids on the MAW website in our area were in remission. WE have had some other issues with CF not "counting" as a serious disease. WE live 3 hours from our care center and were told when our son was in the PICU for 3 weeks that we could not stay at the Ronald McDonald house because CF is not as expensive or as serious as Cancer. Bugged us a lot.

NYCLawGirl · Feb 19, 2010

First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.

I also have to say that this whole cancer thing really irks me. Since when are diseases in competition to be the most serious? Since when is the Ronald McDonald House only open to the "sickest" patient? Should we be lining up all the kids and doing triage like they do in an ER to determine who gets what make-a-wish trip and who gets what room in the RMH and who gets what flavor jello in the hospital cafeteria? I mean, I just find this whole thing ridiculous! Why would you ever, ever, EVER want to compare one child's potentially deadly illness to another? I don't care if the kid is dying from an ear infection...it's still every bit as tough on the family.

I might get some heat for this, but I think IF they are going to consider a criteria other than simply "all life-threatening diseases" it should be financial need. If they are going to say that there are limited funds and they have to spend wisely, then they should either 1) require wishes to be a little more realistic in terms of cost, or 2) make the wishes only for families who could not otherwise afford something like a vacation or a bedroom set. I'm not saying that they SHOULD take the latter approach, but I do think it would be better than excluding a disease that carries with it as much chronic illness and emotional baggage as CF.

Also, not many pediatric CFers need transplants in this day and age, thankfully, but MAW only grants wishes up to 18. So just b/c CFers often make it into their 20s, after years and years of repeated hospitalizations, before needing new lungs, now we're not eligible at all?

I can totally accept that a kid with cancer who is in remission deserves a special "wish" for all s/he has been through and I would never begrudge that child the chance. I would hope that family's child wouldn't begrudge a CFer that chance either.

Sorry for the rant. I never had a wish granted, but I do contribute to MAW and consider them a really great charity. I might have to reconsider if they have such arbitrary policy, even on a local level. Have you tried contacting the national branch and sharing your story? Even if it doesn't get you a wish, it would still be worth asking for an explanation.

NYCLawGirl · Feb 19, 2010

First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.

I also have to say that this whole cancer thing really irks me. Since when are diseases in competition to be the most serious? Since when is the Ronald McDonald House only open to the "sickest" patient? Should we be lining up all the kids and doing triage like they do in an ER to determine who gets what make-a-wish trip and who gets what room in the RMH and who gets what flavor jello in the hospital cafeteria? I mean, I just find this whole thing ridiculous! Why would you ever, ever, EVER want to compare one child's potentially deadly illness to another? I don't care if the kid is dying from an ear infection...it's still every bit as tough on the family.

I might get some heat for this, but I think IF they are going to consider a criteria other than simply "all life-threatening diseases" it should be financial need. If they are going to say that there are limited funds and they have to spend wisely, then they should either 1) require wishes to be a little more realistic in terms of cost, or 2) make the wishes only for families who could not otherwise afford something like a vacation or a bedroom set. I'm not saying that they SHOULD take the latter approach, but I do think it would be better than excluding a disease that carries with it as much chronic illness and emotional baggage as CF.

Also, not many pediatric CFers need transplants in this day and age, thankfully, but MAW only grants wishes up to 18. So just b/c CFers often make it into their 20s, after years and years of repeated hospitalizations, before needing new lungs, now we're not eligible at all?

I can totally accept that a kid with cancer who is in remission deserves a special "wish" for all s/he has been through and I would never begrudge that child the chance. I would hope that family's child wouldn't begrudge a CFer that chance either.

Sorry for the rant. I never had a wish granted, but I do contribute to MAW and consider them a really great charity. I might have to reconsider if they have such arbitrary policy, even on a local level. Have you tried contacting the national branch and sharing your story? Even if it doesn't get you a wish, it would still be worth asking for an explanation.

NYCLawGirl · Feb 19, 2010

First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.

I also have to say that this whole cancer thing really irks me. Since when are diseases in competition to be the most serious? Since when is the Ronald McDonald House only open to the "sickest" patient? Should we be lining up all the kids and doing triage like they do in an ER to determine who gets what make-a-wish trip and who gets what room in the RMH and who gets what flavor jello in the hospital cafeteria? I mean, I just find this whole thing ridiculous! Why would you ever, ever, EVER want to compare one child's potentially deadly illness to another? I don't care if the kid is dying from an ear infection...it's still every bit as tough on the family.

I might get some heat for this, but I think IF they are going to consider a criteria other than simply "all life-threatening diseases" it should be financial need. If they are going to say that there are limited funds and they have to spend wisely, then they should either 1) require wishes to be a little more realistic in terms of cost, or 2) make the wishes only for families who could not otherwise afford something like a vacation or a bedroom set. I'm not saying that they SHOULD take the latter approach, but I do think it would be better than excluding a disease that carries with it as much chronic illness and emotional baggage as CF.

Also, not many pediatric CFers need transplants in this day and age, thankfully, but MAW only grants wishes up to 18. So just b/c CFers often make it into their 20s, after years and years of repeated hospitalizations, before needing new lungs, now we're not eligible at all?

I can totally accept that a kid with cancer who is in remission deserves a special "wish" for all s/he has been through and I would never begrudge that child the chance. I would hope that family's child wouldn't begrudge a CFer that chance either.

Sorry for the rant. I never had a wish granted, but I do contribute to MAW and consider them a really great charity. I might have to reconsider if they have such arbitrary policy, even on a local level. Have you tried contacting the national branch and sharing your story? Even if it doesn't get you a wish, it would still be worth asking for an explanation.

NYCLawGirl · Feb 19, 2010

First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.

I also have to say that this whole cancer thing really irks me. Since when are diseases in competition to be the most serious? Since when is the Ronald McDonald House only open to the "sickest" patient? Should we be lining up all the kids and doing triage like they do in an ER to determine who gets what make-a-wish trip and who gets what room in the RMH and who gets what flavor jello in the hospital cafeteria? I mean, I just find this whole thing ridiculous! Why would you ever, ever, EVER want to compare one child's potentially deadly illness to another? I don't care if the kid is dying from an ear infection...it's still every bit as tough on the family.

I might get some heat for this, but I think IF they are going to consider a criteria other than simply "all life-threatening diseases" it should be financial need. If they are going to say that there are limited funds and they have to spend wisely, then they should either 1) require wishes to be a little more realistic in terms of cost, or 2) make the wishes only for families who could not otherwise afford something like a vacation or a bedroom set. I'm not saying that they SHOULD take the latter approach, but I do think it would be better than excluding a disease that carries with it as much chronic illness and emotional baggage as CF.

Also, not many pediatric CFers need transplants in this day and age, thankfully, but MAW only grants wishes up to 18. So just b/c CFers often make it into their 20s, after years and years of repeated hospitalizations, before needing new lungs, now we're not eligible at all?

I can totally accept that a kid with cancer who is in remission deserves a special "wish" for all s/he has been through and I would never begrudge that child the chance. I would hope that family's child wouldn't begrudge a CFer that chance either.

Sorry for the rant. I never had a wish granted, but I do contribute to MAW and consider them a really great charity. I might have to reconsider if they have such arbitrary policy, even on a local level. Have you tried contacting the national branch and sharing your story? Even if it doesn't get you a wish, it would still be worth asking for an explanation.

NYCLawGirl · Feb 19, 2010

First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.
 
 I also have to say that this whole cancer thing really irks me. Since when are diseases in competition to be the most serious? Since when is the Ronald McDonald House only open to the "sickest" patient? Should we be lining up all the kids and doing triage like they do in an ER to determine who gets what make-a-wish trip and who gets what room in the RMH and who gets what flavor jello in the hospital cafeteria? I mean, I just find this whole thing ridiculous! Why would you ever, ever, EVER want to compare one child's potentially deadly illness to another? I don't care if the kid is dying from an ear infection...it's still every bit as tough on the family.
 
 I might get some heat for this, but I think IF they are going to consider a criteria other than simply "all life-threatening diseases" it should be financial need. If they are going to say that there are limited funds and they have to spend wisely, then they should either 1) require wishes to be a little more realistic in terms of cost, or 2) make the wishes only for families who could not otherwise afford something like a vacation or a bedroom set. I'm not saying that they SHOULD take the latter approach, but I do think it would be better than excluding a disease that carries with it as much chronic illness and emotional baggage as CF.
 
 Also, not many pediatric CFers need transplants in this day and age, thankfully, but MAW only grants wishes up to 18. So just b/c CFers often make it into their 20s, after years and years of repeated hospitalizations, before needing new lungs, now we're not eligible at all?
 
 I can totally accept that a kid with cancer who is in remission deserves a special "wish" for all s/he has been through and I would never begrudge that child the chance. I would hope that family's child wouldn't begrudge a CFer that chance either.
 
 Sorry for the rant. I never had a wish granted, but I do contribute to MAW and consider them a really great charity. I might have to reconsider if they have such arbitrary policy, even on a local level. Have you tried contacting the national branch and sharing your story? Even if it doesn't get you a wish, it would still be worth asking for an explanation.

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