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beansmom
02-18-2010, 02:22 AM
I was wondering for those of you who have had wishes granted or who have children who have had wishes granted how your lung function was. We just applied for a wish for our son who has fairly good lung function and were denied because they said for kids with Cf the rules say they must have severe lung disease and be considered for transplant. This does not sound right to me. I was wondering about other kids who have been granted wishes and also those who have been denied.

beansmom
02-18-2010, 02:22 AM
I was wondering for those of you who have had wishes granted or who have children who have had wishes granted how your lung function was. We just applied for a wish for our son who has fairly good lung function and were denied because they said for kids with Cf the rules say they must have severe lung disease and be considered for transplant. This does not sound right to me. I was wondering about other kids who have been granted wishes and also those who have been denied.

beansmom
02-18-2010, 02:22 AM
I was wondering for those of you who have had wishes granted or who have children who have had wishes granted how your lung function was. We just applied for a wish for our son who has fairly good lung function and were denied because they said for kids with Cf the rules say they must have severe lung disease and be considered for transplant. This does not sound right to me. I was wondering about other kids who have been granted wishes and also those who have been denied.

beansmom
02-18-2010, 02:22 AM
I was wondering for those of you who have had wishes granted or who have children who have had wishes granted how your lung function was. We just applied for a wish for our son who has fairly good lung function and were denied because they said for kids with Cf the rules say they must have severe lung disease and be considered for transplant. This does not sound right to me. I was wondering about other kids who have been granted wishes and also those who have been denied.

beansmom
02-18-2010, 02:22 AM
I was wondering for those of you who have had wishes granted or who have children who have had wishes granted how your lung function was. We just applied for a wish for our son who has fairly good lung function and were denied because they said for kids with Cf the rules say they must have severe lung disease and be considered for transplant. This does not sound right to me. I was wondering about other kids who have been granted wishes and also those who have been denied.

debs2girls
02-18-2010, 02:45 AM
My daughter had her wish granted in Nov. 09. From what I understand..CF is a qualified ailment. I dont think you were told right. BTW, my daughter's CF is considered moderate.

debs2girls
02-18-2010, 02:45 AM
My daughter had her wish granted in Nov. 09. From what I understand..CF is a qualified ailment. I dont think you were told right. BTW, my daughter's CF is considered moderate.

debs2girls
02-18-2010, 02:45 AM
My daughter had her wish granted in Nov. 09. From what I understand..CF is a qualified ailment. I dont think you were told right. BTW, my daughter's CF is considered moderate.

debs2girls
02-18-2010, 02:45 AM
My daughter had her wish granted in Nov. 09. From what I understand..CF is a qualified ailment. I dont think you were told right. BTW, my daughter's CF is considered moderate.

debs2girls
02-18-2010, 02:45 AM
My daughter had her wish granted in Nov. 09. From what I understand..CF is a qualified ailment. I dont think you were told right. BTW, my daughter's CF is considered moderate.

cfgirl1992
02-18-2010, 03:20 AM
I recently just went on a trip to Hawaii that the make a wish foundation gave my family and I on my behalf. We were told both things, my doctors told me that I qualified for a wish (despite that my CF is mild), and contacted the maw. After much planning had gone into the trip the maw told us that they "didnt usually" grant wishes to kids with CF, however because they were so far along they went through with it. Despite that, I do think CF patients qualify for a wish regardless of the status of their health, I would contact your doctor and see what can be done.

cfgirl1992
02-18-2010, 03:20 AM
I recently just went on a trip to Hawaii that the make a wish foundation gave my family and I on my behalf. We were told both things, my doctors told me that I qualified for a wish (despite that my CF is mild), and contacted the maw. After much planning had gone into the trip the maw told us that they "didnt usually" grant wishes to kids with CF, however because they were so far along they went through with it. Despite that, I do think CF patients qualify for a wish regardless of the status of their health, I would contact your doctor and see what can be done.

cfgirl1992
02-18-2010, 03:20 AM
I recently just went on a trip to Hawaii that the make a wish foundation gave my family and I on my behalf. We were told both things, my doctors told me that I qualified for a wish (despite that my CF is mild), and contacted the maw. After much planning had gone into the trip the maw told us that they "didnt usually" grant wishes to kids with CF, however because they were so far along they went through with it. Despite that, I do think CF patients qualify for a wish regardless of the status of their health, I would contact your doctor and see what can be done.

cfgirl1992
02-18-2010, 03:20 AM
I recently just went on a trip to Hawaii that the make a wish foundation gave my family and I on my behalf. We were told both things, my doctors told me that I qualified for a wish (despite that my CF is mild), and contacted the maw. After much planning had gone into the trip the maw told us that they "didnt usually" grant wishes to kids with CF, however because they were so far along they went through with it. Despite that, I do think CF patients qualify for a wish regardless of the status of their health, I would contact your doctor and see what can be done.

cfgirl1992
02-18-2010, 03:20 AM
I recently just went on a trip to Hawaii that the make a wish foundation gave my family and I on my behalf. We were told both things, my doctors told me that I qualified for a wish (despite that my CF is mild), and contacted the maw. After much planning had gone into the trip the maw told us that they "didnt usually" grant wishes to kids with CF, however because they were so far along they went through with it. Despite that, I do think CF patients qualify for a wish regardless of the status of their health, I would contact your doctor and see what can be done.

triples15
02-18-2010, 04:59 AM
Hi,

I was granted a wish twenty years ago when I was 9. I don't really have a clue what my lung function was at the time but I was no where near transplant, as I'm still kickin' on the same lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I'm not familiar with any of their current policies but I haven't heard of them having any requirements as far as lung function/transplant status. I'm with Debbie, I always thought CF in and of itself was enough to qualify.

I'm interested to see the replies from others with recent experiences with MAW.

triples15
02-18-2010, 04:59 AM
Hi,

I was granted a wish twenty years ago when I was 9. I don't really have a clue what my lung function was at the time but I was no where near transplant, as I'm still kickin' on the same lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I'm not familiar with any of their current policies but I haven't heard of them having any requirements as far as lung function/transplant status. I'm with Debbie, I always thought CF in and of itself was enough to qualify.

I'm interested to see the replies from others with recent experiences with MAW.

triples15
02-18-2010, 04:59 AM
Hi,

I was granted a wish twenty years ago when I was 9. I don't really have a clue what my lung function was at the time but I was no where near transplant, as I'm still kickin' on the same lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I'm not familiar with any of their current policies but I haven't heard of them having any requirements as far as lung function/transplant status. I'm with Debbie, I always thought CF in and of itself was enough to qualify.

I'm interested to see the replies from others with recent experiences with MAW.

triples15
02-18-2010, 04:59 AM
Hi,

I was granted a wish twenty years ago when I was 9. I don't really have a clue what my lung function was at the time but I was no where near transplant, as I'm still kickin' on the same lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I'm not familiar with any of their current policies but I haven't heard of them having any requirements as far as lung function/transplant status. I'm with Debbie, I always thought CF in and of itself was enough to qualify.

I'm interested to see the replies from others with recent experiences with MAW.

triples15
02-18-2010, 04:59 AM
Hi,
<br />
<br />I was granted a wish twenty years ago when I was 9. I don't really have a clue what my lung function was at the time but I was no where near transplant, as I'm still kickin' on the same lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">.
<br />
<br />I'm not familiar with any of their current policies but I haven't heard of them having any requirements as far as lung function/transplant status. I'm with Debbie, I always thought CF in and of itself was enough to qualify.
<br />
<br />I'm interested to see the replies from others with recent experiences with MAW.

just1more
02-18-2010, 09:53 AM
The ONLY requirement for MAW is a disease that is considered 'life shortening'.

CF qualifies, if they told you otherwise you need to push them a bit if you want the trip.

There is no reason to deny someone their trip. Though I would wonder if $$ is affecting things. We went last spring and at that point the GA/AL chapter of MAW was out of cash due to the economy.

It might be that they are only granting the dire cases right now??? Either way, CF qualifies, FYI went to Disney and there were 2 CF families there the week we went.

just1more
02-18-2010, 09:53 AM
The ONLY requirement for MAW is a disease that is considered 'life shortening'.

CF qualifies, if they told you otherwise you need to push them a bit if you want the trip.

There is no reason to deny someone their trip. Though I would wonder if $$ is affecting things. We went last spring and at that point the GA/AL chapter of MAW was out of cash due to the economy.

It might be that they are only granting the dire cases right now??? Either way, CF qualifies, FYI went to Disney and there were 2 CF families there the week we went.

just1more
02-18-2010, 09:53 AM
The ONLY requirement for MAW is a disease that is considered 'life shortening'.

CF qualifies, if they told you otherwise you need to push them a bit if you want the trip.

There is no reason to deny someone their trip. Though I would wonder if $$ is affecting things. We went last spring and at that point the GA/AL chapter of MAW was out of cash due to the economy.

It might be that they are only granting the dire cases right now??? Either way, CF qualifies, FYI went to Disney and there were 2 CF families there the week we went.

just1more
02-18-2010, 09:53 AM
The ONLY requirement for MAW is a disease that is considered 'life shortening'.

CF qualifies, if they told you otherwise you need to push them a bit if you want the trip.

There is no reason to deny someone their trip. Though I would wonder if $$ is affecting things. We went last spring and at that point the GA/AL chapter of MAW was out of cash due to the economy.

It might be that they are only granting the dire cases right now??? Either way, CF qualifies, FYI went to Disney and there were 2 CF families there the week we went.

just1more
02-18-2010, 09:53 AM
The ONLY requirement for MAW is a disease that is considered 'life shortening'.
<br />
<br />CF qualifies, if they told you otherwise you need to push them a bit if you want the trip.
<br />
<br />There is no reason to deny someone their trip. Though I would wonder if $$ is affecting things. We went last spring and at that point the GA/AL chapter of MAW was out of cash due to the economy.
<br />
<br />It might be that they are only granting the dire cases right now??? Either way, CF qualifies, FYI went to Disney and there were 2 CF families there the week we went.

pnhuffman
02-18-2010, 11:32 AM
My son was granted his wish through the MAW when he was 5 and he is now 8. At that time they had an article in the newspaper about another child that just received his wish and he also had CF. And then another girl with CF received her wish the same year Austin did.

pnhuffman
02-18-2010, 11:32 AM
My son was granted his wish through the MAW when he was 5 and he is now 8. At that time they had an article in the newspaper about another child that just received his wish and he also had CF. And then another girl with CF received her wish the same year Austin did.

pnhuffman
02-18-2010, 11:32 AM
My son was granted his wish through the MAW when he was 5 and he is now 8. At that time they had an article in the newspaper about another child that just received his wish and he also had CF. And then another girl with CF received her wish the same year Austin did.

pnhuffman
02-18-2010, 11:32 AM
My son was granted his wish through the MAW when he was 5 and he is now 8. At that time they had an article in the newspaper about another child that just received his wish and he also had CF. And then another girl with CF received her wish the same year Austin did.

pnhuffman
02-18-2010, 11:32 AM
My son was granted his wish through the MAW when he was 5 and he is now 8. At that time they had an article in the newspaper about another child that just received his wish and he also had CF. And then another girl with CF received her wish the same year Austin did.

Jane
02-18-2010, 03:55 PM
I agree the information you were given is incorrect. The severity of the disease is not a factor (except to provide safety during a wish trip), only the diagnosis.

Have your clinic social worker call to make the referral. Ours did for us.

My boys each received wishes. Jesse went to Hawaii and Josh had a room makeover. Both boys were in the 60-70 range for lung function.

This drives me crazy. MAW will honor a wish for a kid with cancer <i>in remission</i>,but not a kid whose disease is incurable? It sounds like all the MAW branches need to synchronize their policy.

Jane
02-18-2010, 03:55 PM
I agree the information you were given is incorrect. The severity of the disease is not a factor (except to provide safety during a wish trip), only the diagnosis.

Have your clinic social worker call to make the referral. Ours did for us.

My boys each received wishes. Jesse went to Hawaii and Josh had a room makeover. Both boys were in the 60-70 range for lung function.

This drives me crazy. MAW will honor a wish for a kid with cancer <i>in remission</i>,but not a kid whose disease is incurable? It sounds like all the MAW branches need to synchronize their policy.

Jane
02-18-2010, 03:55 PM
I agree the information you were given is incorrect. The severity of the disease is not a factor (except to provide safety during a wish trip), only the diagnosis.

Have your clinic social worker call to make the referral. Ours did for us.

My boys each received wishes. Jesse went to Hawaii and Josh had a room makeover. Both boys were in the 60-70 range for lung function.

This drives me crazy. MAW will honor a wish for a kid with cancer <i>in remission</i>,but not a kid whose disease is incurable? It sounds like all the MAW branches need to synchronize their policy.

Jane
02-18-2010, 03:55 PM
I agree the information you were given is incorrect. The severity of the disease is not a factor (except to provide safety during a wish trip), only the diagnosis.

Have your clinic social worker call to make the referral. Ours did for us.

My boys each received wishes. Jesse went to Hawaii and Josh had a room makeover. Both boys were in the 60-70 range for lung function.

This drives me crazy. MAW will honor a wish for a kid with cancer <i>in remission</i>,but not a kid whose disease is incurable? It sounds like all the MAW branches need to synchronize their policy.

Jane
02-18-2010, 03:55 PM
I agree the information you were given is incorrect. The severity of the disease is not a factor (except to provide safety during a wish trip), only the diagnosis.
<br />
<br />Have your clinic social worker call to make the referral. Ours did for us.
<br />
<br />My boys each received wishes. Jesse went to Hawaii and Josh had a room makeover. Both boys were in the 60-70 range for lung function.
<br />
<br />This drives me crazy. MAW will honor a wish for a kid with cancer <i>in remission</i>,but not a kid whose disease is incurable? It sounds like all the MAW branches need to synchronize their policy.

debs2girls
02-18-2010, 05:42 PM
Also, when we were discussing a MAW for Chey..they (MAK of OK) said not to wait too long because we didnt want her to be too sick to enjoy it.

debs2girls
02-18-2010, 05:42 PM
Also, when we were discussing a MAW for Chey..they (MAK of OK) said not to wait too long because we didnt want her to be too sick to enjoy it.

debs2girls
02-18-2010, 05:42 PM
Also, when we were discussing a MAW for Chey..they (MAK of OK) said not to wait too long because we didnt want her to be too sick to enjoy it.

debs2girls
02-18-2010, 05:42 PM
Also, when we were discussing a MAW for Chey..they (MAK of OK) said not to wait too long because we didnt want her to be too sick to enjoy it.

debs2girls
02-18-2010, 05:42 PM
Also, when we were discussing a MAW for Chey..they (MAK of OK) said not to wait too long because we didnt want her to be too sick to enjoy it.

jennylivingston
02-18-2010, 08:58 PM
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
02-18-2010, 08:58 PM
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
02-18-2010, 08:58 PM
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
02-18-2010, 08:58 PM
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
02-18-2010, 08:58 PM
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.
<br />
<br />Granted, this was about 13 years ago, but even still... I don't imagine the guidelines would have changed THAT much.

Liza
02-18-2010, 10:20 PM
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
02-18-2010, 10:20 PM
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
02-18-2010, 10:20 PM
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
02-18-2010, 10:20 PM
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
02-18-2010, 10:20 PM
I wonder if for some stupid reason it might have to do with the state you are in.
<br />
<br /> 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.
<br />
<br />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.
<br />
<br />I would check again. Good luck and I hope your son gets his wish.

beansmom
02-19-2010, 02:15 AM
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
02-19-2010, 02:15 AM
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
02-19-2010, 02:15 AM
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
02-19-2010, 02:15 AM
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
02-19-2010, 02:15 AM
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
<br />
<br />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
02-19-2010, 04:00 AM
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
02-19-2010, 04:00 AM
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
02-19-2010, 04:00 AM
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
02-19-2010, 04:00 AM
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
02-19-2010, 04:00 AM
First off, I'm really sorry your son won't be getting a wish. I think that's just terrible.
<br />
<br />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.
<br />
<br />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.
<br />
<br />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?
<br />
<br />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.
<br />
<br />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.

rcq925
02-19-2010, 10:10 AM
We actually just started the process for our daughter. The paperwork has been sent by Make A Wish to our doctor and we are waiting to hear back from them. We live in Indiana and I know of other CF Families that have been granted wishes with children of young ages. I had always intended to wait until Hayley was older (she turns 6 tomorrow), but we decided why wait? You never know what the future holds and I want her to get her wish while she is still healthy enough to enjoy it. She plans to wish for a trip to Disney, which will be very magical for her at her present age.

I am so sorry that the state you are in are being such pains in the butts! I think that there are a few other wish organizations out there, other than Make A Wish that you could contact. You also might contact the National Make A Wish Office or have your doctor call the National Office and see if anything can be done. I would not think that each state should get to make up their own qualifications on which diseases/illnesses qualify (especially if they qualify in other states). Sure they may be able to limit the amount spent on a wish due to fund availabilty, but should not be able to pick and choose how severe your disease is. Good Luck!

rcq925
02-19-2010, 10:10 AM
We actually just started the process for our daughter. The paperwork has been sent by Make A Wish to our doctor and we are waiting to hear back from them. We live in Indiana and I know of other CF Families that have been granted wishes with children of young ages. I had always intended to wait until Hayley was older (she turns 6 tomorrow), but we decided why wait? You never know what the future holds and I want her to get her wish while she is still healthy enough to enjoy it. She plans to wish for a trip to Disney, which will be very magical for her at her present age.

I am so sorry that the state you are in are being such pains in the butts! I think that there are a few other wish organizations out there, other than Make A Wish that you could contact. You also might contact the National Make A Wish Office or have your doctor call the National Office and see if anything can be done. I would not think that each state should get to make up their own qualifications on which diseases/illnesses qualify (especially if they qualify in other states). Sure they may be able to limit the amount spent on a wish due to fund availabilty, but should not be able to pick and choose how severe your disease is. Good Luck!

rcq925
02-19-2010, 10:10 AM
We actually just started the process for our daughter. The paperwork has been sent by Make A Wish to our doctor and we are waiting to hear back from them. We live in Indiana and I know of other CF Families that have been granted wishes with children of young ages. I had always intended to wait until Hayley was older (she turns 6 tomorrow), but we decided why wait? You never know what the future holds and I want her to get her wish while she is still healthy enough to enjoy it. She plans to wish for a trip to Disney, which will be very magical for her at her present age.

I am so sorry that the state you are in are being such pains in the butts! I think that there are a few other wish organizations out there, other than Make A Wish that you could contact. You also might contact the National Make A Wish Office or have your doctor call the National Office and see if anything can be done. I would not think that each state should get to make up their own qualifications on which diseases/illnesses qualify (especially if they qualify in other states). Sure they may be able to limit the amount spent on a wish due to fund availabilty, but should not be able to pick and choose how severe your disease is. Good Luck!

rcq925
02-19-2010, 10:10 AM
We actually just started the process for our daughter. The paperwork has been sent by Make A Wish to our doctor and we are waiting to hear back from them. We live in Indiana and I know of other CF Families that have been granted wishes with children of young ages. I had always intended to wait until Hayley was older (she turns 6 tomorrow), but we decided why wait? You never know what the future holds and I want her to get her wish while she is still healthy enough to enjoy it. She plans to wish for a trip to Disney, which will be very magical for her at her present age.

I am so sorry that the state you are in are being such pains in the butts! I think that there are a few other wish organizations out there, other than Make A Wish that you could contact. You also might contact the National Make A Wish Office or have your doctor call the National Office and see if anything can be done. I would not think that each state should get to make up their own qualifications on which diseases/illnesses qualify (especially if they qualify in other states). Sure they may be able to limit the amount spent on a wish due to fund availabilty, but should not be able to pick and choose how severe your disease is. Good Luck!

rcq925
02-19-2010, 10:10 AM
We actually just started the process for our daughter. The paperwork has been sent by Make A Wish to our doctor and we are waiting to hear back from them. We live in Indiana and I know of other CF Families that have been granted wishes with children of young ages. I had always intended to wait until Hayley was older (she turns 6 tomorrow), but we decided why wait? You never know what the future holds and I want her to get her wish while she is still healthy enough to enjoy it. She plans to wish for a trip to Disney, which will be very magical for her at her present age.
<br />
<br />I am so sorry that the state you are in are being such pains in the butts! I think that there are a few other wish organizations out there, other than Make A Wish that you could contact. You also might contact the National Make A Wish Office or have your doctor call the National Office and see if anything can be done. I would not think that each state should get to make up their own qualifications on which diseases/illnesses qualify (especially if they qualify in other states). Sure they may be able to limit the amount spent on a wish due to fund availabilty, but should not be able to pick and choose how severe your disease is. Good Luck!

debs2girls
02-19-2010, 11:03 AM
I have always loved MAW, long before we had our daughter. My mind is changing on the way I think of them.
Also, we stay in the RMH every three months when we travel to another state for treatment. The last time (January) we were there, there was another family there with their CF son.

Good luck to you...btw, what state are you in?

debs2girls
02-19-2010, 11:03 AM
I have always loved MAW, long before we had our daughter. My mind is changing on the way I think of them.
Also, we stay in the RMH every three months when we travel to another state for treatment. The last time (January) we were there, there was another family there with their CF son.

Good luck to you...btw, what state are you in?

debs2girls
02-19-2010, 11:03 AM
I have always loved MAW, long before we had our daughter. My mind is changing on the way I think of them.
Also, we stay in the RMH every three months when we travel to another state for treatment. The last time (January) we were there, there was another family there with their CF son.

Good luck to you...btw, what state are you in?

debs2girls
02-19-2010, 11:03 AM
I have always loved MAW, long before we had our daughter. My mind is changing on the way I think of them.
Also, we stay in the RMH every three months when we travel to another state for treatment. The last time (January) we were there, there was another family there with their CF son.

Good luck to you...btw, what state are you in?

debs2girls
02-19-2010, 11:03 AM
I have always loved MAW, long before we had our daughter. My mind is changing on the way I think of them.
<br />Also, we stay in the RMH every three months when we travel to another state for treatment. The last time (January) we were there, there was another family there with their CF son.
<br />
<br />Good luck to you...btw, what state are you in?

laulau555
02-19-2010, 12:27 PM
I have very good lung function at present (fev1 81%) however, at the time of my wish almost 4 years ago now, I had been in and out of the hospital a lot. My family and I were hesitant about going through with a wish when it was first suggested because we felt that I wasn't as sick as some people. But I do agree with what some people said, diseases should not be in competition. CF still affects families when their child must go in the hospital or do therapy every day. My wish, a cruise, allowed me to take a vacation from the realities of CF and I'm so glad I took advantage of the opportunity when it was presented. I would look further into it, I have never heard that someone with CF had to be listed for a transplant in order to get a wish!

laulau555
02-19-2010, 12:27 PM
I have very good lung function at present (fev1 81%) however, at the time of my wish almost 4 years ago now, I had been in and out of the hospital a lot. My family and I were hesitant about going through with a wish when it was first suggested because we felt that I wasn't as sick as some people. But I do agree with what some people said, diseases should not be in competition. CF still affects families when their child must go in the hospital or do therapy every day. My wish, a cruise, allowed me to take a vacation from the realities of CF and I'm so glad I took advantage of the opportunity when it was presented. I would look further into it, I have never heard that someone with CF had to be listed for a transplant in order to get a wish!

laulau555
02-19-2010, 12:27 PM
I have very good lung function at present (fev1 81%) however, at the time of my wish almost 4 years ago now, I had been in and out of the hospital a lot. My family and I were hesitant about going through with a wish when it was first suggested because we felt that I wasn't as sick as some people. But I do agree with what some people said, diseases should not be in competition. CF still affects families when their child must go in the hospital or do therapy every day. My wish, a cruise, allowed me to take a vacation from the realities of CF and I'm so glad I took advantage of the opportunity when it was presented. I would look further into it, I have never heard that someone with CF had to be listed for a transplant in order to get a wish!

laulau555
02-19-2010, 12:27 PM
I have very good lung function at present (fev1 81%) however, at the time of my wish almost 4 years ago now, I had been in and out of the hospital a lot. My family and I were hesitant about going through with a wish when it was first suggested because we felt that I wasn't as sick as some people. But I do agree with what some people said, diseases should not be in competition. CF still affects families when their child must go in the hospital or do therapy every day. My wish, a cruise, allowed me to take a vacation from the realities of CF and I'm so glad I took advantage of the opportunity when it was presented. I would look further into it, I have never heard that someone with CF had to be listed for a transplant in order to get a wish!

laulau555
02-19-2010, 12:27 PM
I have very good lung function at present (fev1 81%) however, at the time of my wish almost 4 years ago now, I had been in and out of the hospital a lot. My family and I were hesitant about going through with a wish when it was first suggested because we felt that I wasn't as sick as some people. But I do agree with what some people said, diseases should not be in competition. CF still affects families when their child must go in the hospital or do therapy every day. My wish, a cruise, allowed me to take a vacation from the realities of CF and I'm so glad I took advantage of the opportunity when it was presented. I would look further into it, I have never heard that someone with CF had to be listed for a transplant in order to get a wish!

summer732
02-19-2010, 02:56 PM
I'm thinking area has to have a lot to do with this. My doctor approached Make a Wish on my behalf, even though at the time my lung function was stable (somewhere in the 60s). I was 18 when I made my wish and 20 when it was granted. I went to go watch an episode of FRIENDS being taped and met the entire cast! It was such a memorable experience.

I'm disappointed that such a credible organization wouldn't think that Cystic Fibrosis is a terrible enough disease to grant wishes. Seems a bit ridiculous.

summer732
02-19-2010, 02:56 PM
I'm thinking area has to have a lot to do with this. My doctor approached Make a Wish on my behalf, even though at the time my lung function was stable (somewhere in the 60s). I was 18 when I made my wish and 20 when it was granted. I went to go watch an episode of FRIENDS being taped and met the entire cast! It was such a memorable experience.

I'm disappointed that such a credible organization wouldn't think that Cystic Fibrosis is a terrible enough disease to grant wishes. Seems a bit ridiculous.

summer732
02-19-2010, 02:56 PM
I'm thinking area has to have a lot to do with this. My doctor approached Make a Wish on my behalf, even though at the time my lung function was stable (somewhere in the 60s). I was 18 when I made my wish and 20 when it was granted. I went to go watch an episode of FRIENDS being taped and met the entire cast! It was such a memorable experience.

I'm disappointed that such a credible organization wouldn't think that Cystic Fibrosis is a terrible enough disease to grant wishes. Seems a bit ridiculous.

summer732
02-19-2010, 02:56 PM
I'm thinking area has to have a lot to do with this. My doctor approached Make a Wish on my behalf, even though at the time my lung function was stable (somewhere in the 60s). I was 18 when I made my wish and 20 when it was granted. I went to go watch an episode of FRIENDS being taped and met the entire cast! It was such a memorable experience.

I'm disappointed that such a credible organization wouldn't think that Cystic Fibrosis is a terrible enough disease to grant wishes. Seems a bit ridiculous.

summer732
02-19-2010, 02:56 PM
I'm thinking area has to have a lot to do with this. My doctor approached Make a Wish on my behalf, even though at the time my lung function was stable (somewhere in the 60s). I was 18 when I made my wish and 20 when it was granted. I went to go watch an episode of FRIENDS being taped and met the entire cast! It was such a memorable experience.
<br />
<br />I'm disappointed that such a credible organization wouldn't think that Cystic Fibrosis is a terrible enough disease to grant wishes. Seems a bit ridiculous.

lindsleyfamily
02-19-2010, 03:11 PM
I looked up on the MAW website and it said that they grant wishes to those under 18 who have a progressive, degenerative or malignant conditin. CF obviously qualifies under progressive. My 9 year old just meet with her wish granter last weekend. She wished to go to Disney World. Our state also has another group that grants wishes, on a little smaller scale. Maybe you could find one in your area.

lindsleyfamily
02-19-2010, 03:11 PM
I looked up on the MAW website and it said that they grant wishes to those under 18 who have a progressive, degenerative or malignant conditin. CF obviously qualifies under progressive. My 9 year old just meet with her wish granter last weekend. She wished to go to Disney World. Our state also has another group that grants wishes, on a little smaller scale. Maybe you could find one in your area.

lindsleyfamily
02-19-2010, 03:11 PM
I looked up on the MAW website and it said that they grant wishes to those under 18 who have a progressive, degenerative or malignant conditin. CF obviously qualifies under progressive. My 9 year old just meet with her wish granter last weekend. She wished to go to Disney World. Our state also has another group that grants wishes, on a little smaller scale. Maybe you could find one in your area.

lindsleyfamily
02-19-2010, 03:11 PM
I looked up on the MAW website and it said that they grant wishes to those under 18 who have a progressive, degenerative or malignant conditin. CF obviously qualifies under progressive. My 9 year old just meet with her wish granter last weekend. She wished to go to Disney World. Our state also has another group that grants wishes, on a little smaller scale. Maybe you could find one in your area.

lindsleyfamily
02-19-2010, 03:11 PM
I looked up on the MAW website and it said that they grant wishes to those under 18 who have a progressive, degenerative or malignant conditin. CF obviously qualifies under progressive. My 9 year old just meet with her wish granter last weekend. She wished to go to Disney World. Our state also has another group that grants wishes, on a little smaller scale. Maybe you could find one in your area.

beansmom
02-20-2010, 03:38 AM
Deb

We live in California

Our doctor tried to contact the national office and no one has gotten back to her.

Amy, our local office says that even though CF is progressive since they do not know how fast it will progress they only give wishes to kids who have already progressed so far that they need transplants.

Hopefully next week our doctor will hear back from the national office, but it sounds like this is not a national policy but rather local.

Amy I am curious what other wish granting organization you are aware of.

beansmom
02-20-2010, 03:38 AM
Deb

We live in California

Our doctor tried to contact the national office and no one has gotten back to her.

Amy, our local office says that even though CF is progressive since they do not know how fast it will progress they only give wishes to kids who have already progressed so far that they need transplants.

Hopefully next week our doctor will hear back from the national office, but it sounds like this is not a national policy but rather local.

Amy I am curious what other wish granting organization you are aware of.

beansmom
02-20-2010, 03:38 AM
Deb

We live in California

Our doctor tried to contact the national office and no one has gotten back to her.

Amy, our local office says that even though CF is progressive since they do not know how fast it will progress they only give wishes to kids who have already progressed so far that they need transplants.

Hopefully next week our doctor will hear back from the national office, but it sounds like this is not a national policy but rather local.

Amy I am curious what other wish granting organization you are aware of.

beansmom
02-20-2010, 03:38 AM
Deb

We live in California

Our doctor tried to contact the national office and no one has gotten back to her.

Amy, our local office says that even though CF is progressive since they do not know how fast it will progress they only give wishes to kids who have already progressed so far that they need transplants.

Hopefully next week our doctor will hear back from the national office, but it sounds like this is not a national policy but rather local.

Amy I am curious what other wish granting organization you are aware of.

beansmom
02-20-2010, 03:38 AM
Deb
<br />
<br />We live in California
<br />
<br />Our doctor tried to contact the national office and no one has gotten back to her.
<br />
<br />Amy, our local office says that even though CF is progressive since they do not know how fast it will progress they only give wishes to kids who have already progressed so far that they need transplants.
<br />
<br />Hopefully next week our doctor will hear back from the national office, but it sounds like this is not a national policy but rather local.
<br />
<br />Amy I am curious what other wish granting organization you are aware of.

Jane
02-20-2010, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beansmom</b></i>

Amy I am curious what other wish granting organization you are aware of.</end quote></div>

Here's a list:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.familyvillage.wisc.edu/general/wish-grant-orgs.html">http://www.familyvillage.wisc....l/wish-grant-orgs.html</a>

Jane
02-20-2010, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beansmom</b></i>

Amy I am curious what other wish granting organization you are aware of.</end quote></div>

Here's a list:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.familyvillage.wisc.edu/general/wish-grant-orgs.html">http://www.familyvillage.wisc....l/wish-grant-orgs.html</a>

Jane
02-20-2010, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beansmom</b></i>

Amy I am curious what other wish granting organization you are aware of.</end quote></div>

Here's a list:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.familyvillage.wisc.edu/general/wish-grant-orgs.html">http://www.familyvillage.wisc....l/wish-grant-orgs.html</a>

Jane
02-20-2010, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beansmom</b></i>

Amy I am curious what other wish granting organization you are aware of.</end quote>

Here's a list:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.familyvillage.wisc.edu/general/wish-grant-orgs.html">http://www.familyvillage.wisc....l/wish-grant-orgs.html</a>

Jane
02-20-2010, 10:27 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beansmom</b></i>
<br />
<br />Amy I am curious what other wish granting organization you are aware of.</end quote>
<br />
<br />Here's a list:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.familyvillage.wisc.edu/general/wish-grant-orgs.html">http://www.familyvillage.wisc....l/wish-grant-orgs.html</a>

lindsleyfamily
02-20-2010, 01:02 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something because your son.

lindsleyfamily
02-20-2010, 01:02 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something because your son.

lindsleyfamily
02-20-2010, 01:02 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something because your son.

lindsleyfamily
02-20-2010, 01:02 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something because your son.

lindsleyfamily
02-20-2010, 01:02 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something because your son.

lindsleyfamily
02-20-2010, 01:03 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something for your son.

lindsleyfamily
02-20-2010, 01:03 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something for your son.

lindsleyfamily
02-20-2010, 01:03 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something for your son.

lindsleyfamily
02-20-2010, 01:03 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something for your son.

lindsleyfamily
02-20-2010, 01:03 PM
We are in Colorado and years ago I came across a website that granted wishes for kids. I cannot find it right now. I did type in "granting wishes for sick kids" in my search engine and many organizations popped up. The most concise list was provided by Jane in the previous post. It is unfortunate that the states have different criteria because our daughter's lung functions are above the 100% and she will have her wish granted this summer. I even told our social worker that I felt guilty asking for it but she said that it is better for them to go while they can still enjoy it. I hope you find something for your son.

Brad
02-21-2010, 05:06 PM
" IF " The MAW will not grant wishes to People with Cf
I have made my Last Donation to them.

Brad
02-21-2010, 05:06 PM
" IF " The MAW will not grant wishes to People with Cf
I have made my Last Donation to them.

Brad
02-21-2010, 05:06 PM
" IF " The MAW will not grant wishes to People with Cf
I have made my Last Donation to them.

Brad
02-21-2010, 05:06 PM
" IF " The MAW will not grant wishes to People with Cf
I have made my Last Donation to them.

Brad
02-21-2010, 05:06 PM
" IF " The MAW will not grant wishes to People with Cf
<br /> I have made my Last Donation to them.

Sakem
02-21-2010, 07:26 PM
i know they refused my son a few years ago, said he was not sick enough

Sakem
02-21-2010, 07:26 PM
i know they refused my son a few years ago, said he was not sick enough

Sakem
02-21-2010, 07:26 PM
i know they refused my son a few years ago, said he was not sick enough

Sakem
02-21-2010, 07:26 PM
i know they refused my son a few years ago, said he was not sick enough

Sakem
02-21-2010, 07:26 PM
i know they refused my son a few years ago, said he was not sick enough

crickit715
02-22-2010, 07:03 PM
i was curious after reading these posts so i sent an email to the MAW foundation asking specifically about CF and this was their reply:

Who can receive a wish?

All children under the age of 18 with a life-threatening medical condition are potentially eligible for a wish. The purpose of the Make-A-Wish Foundation is to grant the wish of each child between the ages of 2- and under 18 living with a life-threatening medical condition, i.e., a progressive, degenerative, or malignant medical condition that has placed the child's life in jeopardy. Prior to their 18th birthday, each child must be referred, and determined to be currently medically eligible by their primary attending medical professional. The Make-A-Wish Foundation is committed to granting the wish of each child who meets the Foundation's eligibility criteria at the time they are referred to us. Each child's treating medical professional makes the final determination of whether his or her medical condition currently meets the Foundation's eligibility criteria.

Does a child's condition have to be terminal to qualify for a wish?

No. We do not deny potential wish children because their illness may not be terminal. Many of the children who qualify for a wish go on to lead healthy and happy lives. We are committed to reaching every medically eligible child and providing the hope, strength, and joy that a wish can bring.

(just wanted to share what they sent me)

crickit715
02-22-2010, 07:03 PM
i was curious after reading these posts so i sent an email to the MAW foundation asking specifically about CF and this was their reply:

Who can receive a wish?

All children under the age of 18 with a life-threatening medical condition are potentially eligible for a wish. The purpose of the Make-A-Wish Foundation is to grant the wish of each child between the ages of 2- and under 18 living with a life-threatening medical condition, i.e., a progressive, degenerative, or malignant medical condition that has placed the child's life in jeopardy. Prior to their 18th birthday, each child must be referred, and determined to be currently medically eligible by their primary attending medical professional. The Make-A-Wish Foundation is committed to granting the wish of each child who meets the Foundation's eligibility criteria at the time they are referred to us. Each child's treating medical professional makes the final determination of whether his or her medical condition currently meets the Foundation's eligibility criteria.

Does a child's condition have to be terminal to qualify for a wish?

No. We do not deny potential wish children because their illness may not be terminal. Many of the children who qualify for a wish go on to lead healthy and happy lives. We are committed to reaching every medically eligible child and providing the hope, strength, and joy that a wish can bring.

(just wanted to share what they sent me)

crickit715
02-22-2010, 07:03 PM
i was curious after reading these posts so i sent an email to the MAW foundation asking specifically about CF and this was their reply:

Who can receive a wish?

All children under the age of 18 with a life-threatening medical condition are potentially eligible for a wish. The purpose of the Make-A-Wish Foundation is to grant the wish of each child between the ages of 2- and under 18 living with a life-threatening medical condition, i.e., a progressive, degenerative, or malignant medical condition that has placed the child's life in jeopardy. Prior to their 18th birthday, each child must be referred, and determined to be currently medically eligible by their primary attending medical professional. The Make-A-Wish Foundation is committed to granting the wish of each child who meets the Foundation's eligibility criteria at the time they are referred to us. Each child's treating medical professional makes the final determination of whether his or her medical condition currently meets the Foundation's eligibility criteria.

Does a child's condition have to be terminal to qualify for a wish?

No. We do not deny potential wish children because their illness may not be terminal. Many of the children who qualify for a wish go on to lead healthy and happy lives. We are committed to reaching every medically eligible child and providing the hope, strength, and joy that a wish can bring.

(just wanted to share what they sent me)

crickit715
02-22-2010, 07:03 PM
i was curious after reading these posts so i sent an email to the MAW foundation asking specifically about CF and this was their reply:

Who can receive a wish?

All children under the age of 18 with a life-threatening medical condition are potentially eligible for a wish. The purpose of the Make-A-Wish Foundation is to grant the wish of each child between the ages of 2- and under 18 living with a life-threatening medical condition, i.e., a progressive, degenerative, or malignant medical condition that has placed the child's life in jeopardy. Prior to their 18th birthday, each child must be referred, and determined to be currently medically eligible by their primary attending medical professional. The Make-A-Wish Foundation is committed to granting the wish of each child who meets the Foundation's eligibility criteria at the time they are referred to us. Each child's treating medical professional makes the final determination of whether his or her medical condition currently meets the Foundation's eligibility criteria.

Does a child's condition have to be terminal to qualify for a wish?

No. We do not deny potential wish children because their illness may not be terminal. Many of the children who qualify for a wish go on to lead healthy and happy lives. We are committed to reaching every medically eligible child and providing the hope, strength, and joy that a wish can bring.

(just wanted to share what they sent me)

crickit715
02-22-2010, 07:03 PM
i was curious after reading these posts so i sent an email to the MAW foundation asking specifically about CF and this was their reply:
<br />
<br />Who can receive a wish?
<br />
<br />All children under the age of 18 with a life-threatening medical condition are potentially eligible for a wish. The purpose of the Make-A-Wish Foundation is to grant the wish of each child between the ages of 2- and under 18 living with a life-threatening medical condition, i.e., a progressive, degenerative, or malignant medical condition that has placed the child's life in jeopardy. Prior to their 18th birthday, each child must be referred, and determined to be currently medically eligible by their primary attending medical professional. The Make-A-Wish Foundation is committed to granting the wish of each child who meets the Foundation's eligibility criteria at the time they are referred to us. Each child's treating medical professional makes the final determination of whether his or her medical condition currently meets the Foundation's eligibility criteria.
<br />
<br />Does a child's condition have to be terminal to qualify for a wish?
<br />
<br />No. We do not deny potential wish children because their illness may not be terminal. Many of the children who qualify for a wish go on to lead healthy and happy lives. We are committed to reaching every medically eligible child and providing the hope, strength, and joy that a wish can bring.
<br />
<br />(just wanted to share what they sent me)

just1more
02-22-2010, 07:33 PM
Just to clarify: MY SON GOT HIS MAW TRIP TO DISNEY IN APRIL 2009. And his PFT's are 98% so he is not currently having any CF issues per se.

Anyone that states MAW doesn't give wishes to CFr's is incorrect. If MAW doesn't grant to CFr's I must have imagined my 1st and only trip to WDW <img src="i/expressions/face-icon-small-smile.gif" border="0">

just1more
02-22-2010, 07:33 PM
Just to clarify: MY SON GOT HIS MAW TRIP TO DISNEY IN APRIL 2009. And his PFT's are 98% so he is not currently having any CF issues per se.

Anyone that states MAW doesn't give wishes to CFr's is incorrect. If MAW doesn't grant to CFr's I must have imagined my 1st and only trip to WDW <img src="i/expressions/face-icon-small-smile.gif" border="0">

just1more
02-22-2010, 07:33 PM
Just to clarify: MY SON GOT HIS MAW TRIP TO DISNEY IN APRIL 2009. And his PFT's are 98% so he is not currently having any CF issues per se.

Anyone that states MAW doesn't give wishes to CFr's is incorrect. If MAW doesn't grant to CFr's I must have imagined my 1st and only trip to WDW <img src="i/expressions/face-icon-small-smile.gif" border="0">

just1more
02-22-2010, 07:33 PM
Just to clarify: MY SON GOT HIS MAW TRIP TO DISNEY IN APRIL 2009. And his PFT's are 98% so he is not currently having any CF issues per se.

Anyone that states MAW doesn't give wishes to CFr's is incorrect. If MAW doesn't grant to CFr's I must have imagined my 1st and only trip to WDW <img src="i/expressions/face-icon-small-smile.gif" border="0">

just1more
02-22-2010, 07:33 PM
Just to clarify: MY SON GOT HIS MAW TRIP TO DISNEY IN APRIL 2009. And his PFT's are 98% so he is not currently having any CF issues per se.
<br />
<br />Anyone that states MAW doesn't give wishes to CFr's is incorrect. If MAW doesn't grant to CFr's I must have imagined my 1st and only trip to WDW <img src="i/expressions/face-icon-small-smile.gif" border="0">

Imogene
02-24-2010, 09:59 PM
sorry...not sure how this whole thread got moved! j

Imogene
02-24-2010, 09:59 PM
sorry...not sure how this whole thread got moved! j

Imogene
02-24-2010, 09:59 PM
sorry...not sure how this whole thread got moved! j

Imogene
02-24-2010, 09:59 PM
sorry...not sure how this whole thread got moved! j

Imogene
02-24-2010, 09:59 PM
sorry...not sure how this whole thread got moved! j

Sakem
02-24-2010, 10:08 PM
After reading Cricket's email, I can pretty easy figure out why my son did not get a wish granted, which I suspected all along... I guess his doctor does not think his CF is serious. HA HA.....then why r we doing all these medications and treatments? I really should have confronted the doctor a few years ago when it was denied.

Sakem
02-24-2010, 10:08 PM
After reading Cricket's email, I can pretty easy figure out why my son did not get a wish granted, which I suspected all along... I guess his doctor does not think his CF is serious. HA HA.....then why r we doing all these medications and treatments? I really should have confronted the doctor a few years ago when it was denied.

Sakem
02-24-2010, 10:08 PM
After reading Cricket's email, I can pretty easy figure out why my son did not get a wish granted, which I suspected all along... I guess his doctor does not think his CF is serious. HA HA.....then why r we doing all these medications and treatments? I really should have confronted the doctor a few years ago when it was denied.

Sakem
02-24-2010, 10:08 PM
After reading Cricket's email, I can pretty easy figure out why my son did not get a wish granted, which I suspected all along... I guess his doctor does not think his CF is serious. HA HA.....then why r we doing all these medications and treatments? I really should have confronted the doctor a few years ago when it was denied.

Sakem
02-24-2010, 10:08 PM
After reading Cricket's email, I can pretty easy figure out why my son did not get a wish granted, which I suspected all along... I guess his doctor does not think his CF is serious. HA HA.....then why r we doing all these medications and treatments? I really should have confronted the doctor a few years ago when it was denied.

kandim
02-24-2010, 10:51 PM
I am so sorry they are giving you a hard time about granting your child their wish. My son wasn't diagnosed with cf till he was 9. One of the nurses at a local clinic actually contacted make a wish on my son's behalf. He has always went to the clinic in his nascar shirt and hats. He is a big fan of dale earnhardt jr. Well they granted his wish and didn't even ask about the state of his health. We live in ga. We went to pennsylvannia to meet dale jr. It was a wonderful trip and they were very nice at handeling all the details. We meet two families there. One boy was from fla with mucular dys. We had a blast and it was a once in a life time event. I am so sad they would deny your child this ability. These kids go thru so much dealing with cf that they deserve some kind of break. I don't dish any diease but unlike some dieses like cancer they get to go into remmision. Our kids with cf deal with this everyday and have no relief. Maybe something will come thru Good Luck. (ps That was about years ago).

kandim
02-24-2010, 10:51 PM
I am so sorry they are giving you a hard time about granting your child their wish. My son wasn't diagnosed with cf till he was 9. One of the nurses at a local clinic actually contacted make a wish on my son's behalf. He has always went to the clinic in his nascar shirt and hats. He is a big fan of dale earnhardt jr. Well they granted his wish and didn't even ask about the state of his health. We live in ga. We went to pennsylvannia to meet dale jr. It was a wonderful trip and they were very nice at handeling all the details. We meet two families there. One boy was from fla with mucular dys. We had a blast and it was a once in a life time event. I am so sad they would deny your child this ability. These kids go thru so much dealing with cf that they deserve some kind of break. I don't dish any diease but unlike some dieses like cancer they get to go into remmision. Our kids with cf deal with this everyday and have no relief. Maybe something will come thru Good Luck. (ps That was about years ago).

kandim
02-24-2010, 10:51 PM
I am so sorry they are giving you a hard time about granting your child their wish. My son wasn't diagnosed with cf till he was 9. One of the nurses at a local clinic actually contacted make a wish on my son's behalf. He has always went to the clinic in his nascar shirt and hats. He is a big fan of dale earnhardt jr. Well they granted his wish and didn't even ask about the state of his health. We live in ga. We went to pennsylvannia to meet dale jr. It was a wonderful trip and they were very nice at handeling all the details. We meet two families there. One boy was from fla with mucular dys. We had a blast and it was a once in a life time event. I am so sad they would deny your child this ability. These kids go thru so much dealing with cf that they deserve some kind of break. I don't dish any diease but unlike some dieses like cancer they get to go into remmision. Our kids with cf deal with this everyday and have no relief. Maybe something will come thru Good Luck. (ps That was about years ago).

kandim
02-24-2010, 10:51 PM
I am so sorry they are giving you a hard time about granting your child their wish. My son wasn't diagnosed with cf till he was 9. One of the nurses at a local clinic actually contacted make a wish on my son's behalf. He has always went to the clinic in his nascar shirt and hats. He is a big fan of dale earnhardt jr. Well they granted his wish and didn't even ask about the state of his health. We live in ga. We went to pennsylvannia to meet dale jr. It was a wonderful trip and they were very nice at handeling all the details. We meet two families there. One boy was from fla with mucular dys. We had a blast and it was a once in a life time event. I am so sad they would deny your child this ability. These kids go thru so much dealing with cf that they deserve some kind of break. I don't dish any diease but unlike some dieses like cancer they get to go into remmision. Our kids with cf deal with this everyday and have no relief. Maybe something will come thru Good Luck. (ps That was about years ago).

kandim
02-24-2010, 10:51 PM
I am so sorry they are giving you a hard time about granting your child their wish. My son wasn't diagnosed with cf till he was 9. One of the nurses at a local clinic actually contacted make a wish on my son's behalf. He has always went to the clinic in his nascar shirt and hats. He is a big fan of dale earnhardt jr. Well they granted his wish and didn't even ask about the state of his health. We live in ga. We went to pennsylvannia to meet dale jr. It was a wonderful trip and they were very nice at handeling all the details. We meet two families there. One boy was from fla with mucular dys. We had a blast and it was a once in a life time event. I am so sad they would deny your child this ability. These kids go thru so much dealing with cf that they deserve some kind of break. I don't dish any diease but unlike some dieses like cancer they get to go into remmision. Our kids with cf deal with this everyday and have no relief. Maybe something will come thru Good Luck. (ps That was about years ago).