"Mamma, I am going to die? "

C

cfangel03

Guest
"Mamma, I am going to die?

here are the statistics.....
this is helpful for you....
kids born in the 50's didn't live to see their first birthday - many of them -
kids born in the 60's 70 's expect to live in their 30's/
kids born just 10 years ago, with drugs like pulmozyme, tobi etc, can expect long full lives.....
and the future is promising for the drug vx770, which will come to patient trials soon.
this drug makes cf bodies behave normally.
you can read more about it at cff.org
the future is very bright!
I travel all around the country promoting my books, and have spoken with Dr. Beall, pres. ceo of cff.org
have met with Joe O'Donell, Milestones Campaign, raising millions to fund research, and your son is going to go to college, get married, and be just fine.... Leah
CFF.org just wrote about our family click on link then click on vx770 to read more.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/InTheSpotlight/
">http://www.cff.org/LivingWithCF/InTheSpotlight/
</a>


Leah - sending lots of love your way
 
C

cfangel03

Guest
"Mamma, I am going to die?

here are the statistics.....
this is helpful for you....
kids born in the 50's didn't live to see their first birthday - many of them -
kids born in the 60's 70 's expect to live in their 30's/
kids born just 10 years ago, with drugs like pulmozyme, tobi etc, can expect long full lives.....
and the future is promising for the drug vx770, which will come to patient trials soon.
this drug makes cf bodies behave normally.
you can read more about it at cff.org
the future is very bright!
I travel all around the country promoting my books, and have spoken with Dr. Beall, pres. ceo of cff.org
have met with Joe O'Donell, Milestones Campaign, raising millions to fund research, and your son is going to go to college, get married, and be just fine.... Leah
CFF.org just wrote about our family click on link then click on vx770 to read more.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/InTheSpotlight/
">http://www.cff.org/LivingWithCF/InTheSpotlight/
</a>


Leah - sending lots of love your way
 
C

cfangel03

Guest
"Mamma, I am going to die?

here are the statistics.....
this is helpful for you....
kids born in the 50's didn't live to see their first birthday - many of them -
kids born in the 60's 70 's expect to live in their 30's/
kids born just 10 years ago, with drugs like pulmozyme, tobi etc, can expect long full lives.....
and the future is promising for the drug vx770, which will come to patient trials soon.
this drug makes cf bodies behave normally.
you can read more about it at cff.org
the future is very bright!
I travel all around the country promoting my books, and have spoken with Dr. Beall, pres. ceo of cff.org
have met with Joe O'Donell, Milestones Campaign, raising millions to fund research, and your son is going to go to college, get married, and be just fine.... Leah
CFF.org just wrote about our family click on link then click on vx770 to read more.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/InTheSpotlight/
">http://www.cff.org/LivingWithCF/InTheSpotlight/
</a>


Leah - sending lots of love your way
 
C

cfangel03

Guest
"Mamma, I am going to die?

here are the statistics.....
this is helpful for you....
kids born in the 50's didn't live to see their first birthday - many of them -
kids born in the 60's 70 's expect to live in their 30's/
kids born just 10 years ago, with drugs like pulmozyme, tobi etc, can expect long full lives.....
and the future is promising for the drug vx770, which will come to patient trials soon.
this drug makes cf bodies behave normally.
you can read more about it at cff.org
the future is very bright!
I travel all around the country promoting my books, and have spoken with Dr. Beall, pres. ceo of cff.org
have met with Joe O'Donell, Milestones Campaign, raising millions to fund research, and your son is going to go to college, get married, and be just fine.... Leah
CFF.org just wrote about our family click on link then click on vx770 to read more.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/InTheSpotlight/
">http://www.cff.org/LivingWithCF/InTheSpotlight/
</a>


Leah - sending lots of love your way
 
C

cfangel03

Guest
"Mamma, I am going to die?

here are the statistics.....
<br />this is helpful for you....
<br />kids born in the 50's didn't live to see their first birthday - many of them -
<br />kids born in the 60's 70 's expect to live in their 30's/
<br />kids born just 10 years ago, with drugs like pulmozyme, tobi etc, can expect long full lives.....
<br />and the future is promising for the drug vx770, which will come to patient trials soon.
<br />this drug makes cf bodies behave normally.
<br />you can read more about it at cff.org
<br />the future is very bright!
<br />I travel all around the country promoting my books, and have spoken with Dr. Beall, pres. ceo of cff.org
<br />have met with Joe O'Donell, Milestones Campaign, raising millions to fund research, and your son is going to go to college, get married, and be just fine.... Leah
<br />CFF.org just wrote about our family click on link then click on vx770 to read more.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/InTheSpotlight/
">http://www.cff.org/LivingWithCF/InTheSpotlight/
</a><br />
<br />
<br />
<br />Leah - sending lots of love your way
<br />
 
J

just1more

New member
"Mamma, I am going to die?

Tina, I dread the day this question comes. Our son with CF is 6 (but delayed) so it has not yet come. However, like you we have a large family and we did have the 'talk' with our older kids. We felt they needed to understand what we were getting into. We tried to keep it as basic as possible and answer questions without going into unneeded details. It seems to suffice for now; I only hope that as he progresses we will figure out how to tell him.



On a slightly related issue: this may get deleted and if so I understand.

If we are going to use statistics (previous post) then we must be honest and realistic. We owe it to ourselves & our families.

Currently 50% of people with CF live to see 36 (not a long life in my book). Obviously we have many examples on this site of living beyond that, but nobody can tell when any person will die.

While vx770 looks promising in a research lab, it is targeting a mutation that impacts 3-4% of all cystics so it is not a magic cure for CF. They specifically didn't target DF508 as it is expected to be much more difficult.
 
J

just1more

New member
"Mamma, I am going to die?

Tina, I dread the day this question comes. Our son with CF is 6 (but delayed) so it has not yet come. However, like you we have a large family and we did have the 'talk' with our older kids. We felt they needed to understand what we were getting into. We tried to keep it as basic as possible and answer questions without going into unneeded details. It seems to suffice for now; I only hope that as he progresses we will figure out how to tell him.



On a slightly related issue: this may get deleted and if so I understand.

If we are going to use statistics (previous post) then we must be honest and realistic. We owe it to ourselves & our families.

Currently 50% of people with CF live to see 36 (not a long life in my book). Obviously we have many examples on this site of living beyond that, but nobody can tell when any person will die.

While vx770 looks promising in a research lab, it is targeting a mutation that impacts 3-4% of all cystics so it is not a magic cure for CF. They specifically didn't target DF508 as it is expected to be much more difficult.
 
J

just1more

New member
"Mamma, I am going to die?

Tina, I dread the day this question comes. Our son with CF is 6 (but delayed) so it has not yet come. However, like you we have a large family and we did have the 'talk' with our older kids. We felt they needed to understand what we were getting into. We tried to keep it as basic as possible and answer questions without going into unneeded details. It seems to suffice for now; I only hope that as he progresses we will figure out how to tell him.



On a slightly related issue: this may get deleted and if so I understand.

If we are going to use statistics (previous post) then we must be honest and realistic. We owe it to ourselves & our families.

Currently 50% of people with CF live to see 36 (not a long life in my book). Obviously we have many examples on this site of living beyond that, but nobody can tell when any person will die.

While vx770 looks promising in a research lab, it is targeting a mutation that impacts 3-4% of all cystics so it is not a magic cure for CF. They specifically didn't target DF508 as it is expected to be much more difficult.
 
J

just1more

New member
"Mamma, I am going to die?

Tina, I dread the day this question comes. Our son with CF is 6 (but delayed) so it has not yet come. However, like you we have a large family and we did have the 'talk' with our older kids. We felt they needed to understand what we were getting into. We tried to keep it as basic as possible and answer questions without going into unneeded details. It seems to suffice for now; I only hope that as he progresses we will figure out how to tell him.



On a slightly related issue: this may get deleted and if so I understand.

If we are going to use statistics (previous post) then we must be honest and realistic. We owe it to ourselves & our families.

Currently 50% of people with CF live to see 36 (not a long life in my book). Obviously we have many examples on this site of living beyond that, but nobody can tell when any person will die.

While vx770 looks promising in a research lab, it is targeting a mutation that impacts 3-4% of all cystics so it is not a magic cure for CF. They specifically didn't target DF508 as it is expected to be much more difficult.
 
J

just1more

New member
"Mamma, I am going to die?

Tina, I dread the day this question comes. Our son with CF is 6 (but delayed) so it has not yet come. However, like you we have a large family and we did have the 'talk' with our older kids. We felt they needed to understand what we were getting into. We tried to keep it as basic as possible and answer questions without going into unneeded details. It seems to suffice for now; I only hope that as he progresses we will figure out how to tell him.
<br />
<br />
<br />
<br />On a slightly related issue: this may get deleted and if so I understand.
<br />
<br />If we are going to use statistics (previous post) then we must be honest and realistic. We owe it to ourselves & our families.
<br />
<br />Currently 50% of people with CF live to see 36 (not a long life in my book). Obviously we have many examples on this site of living beyond that, but nobody can tell when any person will die.
<br />
<br />While vx770 looks promising in a research lab, it is targeting a mutation that impacts 3-4% of all cystics so it is not a magic cure for CF. They specifically didn't target DF508 as it is expected to be much more difficult.
 
F

fourkidsmom

New member
"Mamma, I am going to die?

TIna,

I am so sorry, my heart broke when I read the post. I think one thing that makes it harder for him is because he was just recently diagnosed. It is strange because my now 7 yr old son with cf has not yet come out and asked that question. It is like he knows he has always had these issues and it is just him. I almost think it makes it harder to be diagnosed later, my son was diagnosed when I was 7 months pregnant. I feel for you with all have been having to deal with. You must be a very good mother and strong person. Hang in there.

Fourkidsmom
 
F

fourkidsmom

New member
"Mamma, I am going to die?

TIna,

I am so sorry, my heart broke when I read the post. I think one thing that makes it harder for him is because he was just recently diagnosed. It is strange because my now 7 yr old son with cf has not yet come out and asked that question. It is like he knows he has always had these issues and it is just him. I almost think it makes it harder to be diagnosed later, my son was diagnosed when I was 7 months pregnant. I feel for you with all have been having to deal with. You must be a very good mother and strong person. Hang in there.

Fourkidsmom
 
F

fourkidsmom

New member
"Mamma, I am going to die?

TIna,

I am so sorry, my heart broke when I read the post. I think one thing that makes it harder for him is because he was just recently diagnosed. It is strange because my now 7 yr old son with cf has not yet come out and asked that question. It is like he knows he has always had these issues and it is just him. I almost think it makes it harder to be diagnosed later, my son was diagnosed when I was 7 months pregnant. I feel for you with all have been having to deal with. You must be a very good mother and strong person. Hang in there.

Fourkidsmom
 
F

fourkidsmom

New member
"Mamma, I am going to die?

TIna,

I am so sorry, my heart broke when I read the post. I think one thing that makes it harder for him is because he was just recently diagnosed. It is strange because my now 7 yr old son with cf has not yet come out and asked that question. It is like he knows he has always had these issues and it is just him. I almost think it makes it harder to be diagnosed later, my son was diagnosed when I was 7 months pregnant. I feel for you with all have been having to deal with. You must be a very good mother and strong person. Hang in there.

Fourkidsmom
 
F

fourkidsmom

New member
"Mamma, I am going to die?

TIna,
<br />
<br />I am so sorry, my heart broke when I read the post. I think one thing that makes it harder for him is because he was just recently diagnosed. It is strange because my now 7 yr old son with cf has not yet come out and asked that question. It is like he knows he has always had these issues and it is just him. I almost think it makes it harder to be diagnosed later, my son was diagnosed when I was 7 months pregnant. I feel for you with all have been having to deal with. You must be a very good mother and strong person. Hang in there.
<br />
<br />Fourkidsmom
 
H

holmfamily1992

New member
"Mamma, I am going to die?

We are trying to put his fears into simple terms. We dont want to put false things in his head thats for sure. I almost told that people only die when they are old but I stopped myself. Just this year we have been to 2 funerals of young people. One was 15, a close friend of my daughters that died in a snowmobile accident and the other was another 15 year old who was as close to us as our own children. He committed suicide last Feburary. So to tell him only older people die would be lying to him and he knows it.

I think its the statics that kill me the most. I have not done the research on the new drug yet but plan to when we get back.

Well, off to pack. I will try to post his progress as soon as I can.

Thanks you guys,
Tina
 
H

holmfamily1992

New member
"Mamma, I am going to die?

We are trying to put his fears into simple terms. We dont want to put false things in his head thats for sure. I almost told that people only die when they are old but I stopped myself. Just this year we have been to 2 funerals of young people. One was 15, a close friend of my daughters that died in a snowmobile accident and the other was another 15 year old who was as close to us as our own children. He committed suicide last Feburary. So to tell him only older people die would be lying to him and he knows it.

I think its the statics that kill me the most. I have not done the research on the new drug yet but plan to when we get back.

Well, off to pack. I will try to post his progress as soon as I can.

Thanks you guys,
Tina
 
H

holmfamily1992

New member
"Mamma, I am going to die?

We are trying to put his fears into simple terms. We dont want to put false things in his head thats for sure. I almost told that people only die when they are old but I stopped myself. Just this year we have been to 2 funerals of young people. One was 15, a close friend of my daughters that died in a snowmobile accident and the other was another 15 year old who was as close to us as our own children. He committed suicide last Feburary. So to tell him only older people die would be lying to him and he knows it.

I think its the statics that kill me the most. I have not done the research on the new drug yet but plan to when we get back.

Well, off to pack. I will try to post his progress as soon as I can.

Thanks you guys,
Tina
 
H

holmfamily1992

New member
"Mamma, I am going to die?

We are trying to put his fears into simple terms. We dont want to put false things in his head thats for sure. I almost told that people only die when they are old but I stopped myself. Just this year we have been to 2 funerals of young people. One was 15, a close friend of my daughters that died in a snowmobile accident and the other was another 15 year old who was as close to us as our own children. He committed suicide last Feburary. So to tell him only older people die would be lying to him and he knows it.

I think its the statics that kill me the most. I have not done the research on the new drug yet but plan to when we get back.

Well, off to pack. I will try to post his progress as soon as I can.

Thanks you guys,
Tina
 
H

holmfamily1992

New member
"Mamma, I am going to die?

We are trying to put his fears into simple terms. We dont want to put false things in his head thats for sure. I almost told that people only die when they are old but I stopped myself. Just this year we have been to 2 funerals of young people. One was 15, a close friend of my daughters that died in a snowmobile accident and the other was another 15 year old who was as close to us as our own children. He committed suicide last Feburary. So to tell him only older people die would be lying to him and he knows it.
<br />
<br />I think its the statics that kill me the most. I have not done the research on the new drug yet but plan to when we get back.
<br />
<br />Well, off to pack. I will try to post his progress as soon as I can.
<br />
<br />Thanks you guys,
<br />Tina
 
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