I think the hardest part for us is how to deal with our own child's mortality. I know there are advances everyday, especially PTC124, but it's not on the market yet. Given the fact that there is no cure, and I can't gamble on the fact that one will come later, how do I deal with the fact that my child's life could be taken away at the moment they are reaching adulthood, finding a mate, a life purpose, or their passion at work? That is what breaks my heart to no end.
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Terminating pregnancy?
- Thread starter laxgirl
- Start date
I think the hardest part for us is how to deal with our own child's mortality. I know there are advances everyday, especially PTC124, but it's not on the market yet. Given the fact that there is no cure, and I can't gamble on the fact that one will come later, how do I deal with the fact that my child's life could be taken away at the moment they are reaching adulthood, finding a mate, a life purpose, or their passion at work? That is what breaks my heart to no end.
I think the hardest part for us is how to deal with our own child's mortality. I know there are advances everyday, especially PTC124, but it's not on the market yet. Given the fact that there is no cure, and I can't gamble on the fact that one will come later, how do I deal with the fact that my child's life could be taken away at the moment they are reaching adulthood, finding a mate, a life purpose, or their passion at work? That is what breaks my heart to no end.
I think the hardest part for us is how to deal with our own child's mortality. I know there are advances everyday, especially PTC124, but it's not on the market yet. Given the fact that there is no cure, and I can't gamble on the fact that one will come later, how do I deal with the fact that my child's life could be taken away at the moment they are reaching adulthood, finding a mate, a life purpose, or their passion at work? That is what breaks my heart to no end.
I think the hardest part for us is how to deal with our own child's mortality. I know there are advances everyday, especially PTC124, but it's not on the market yet. Given the fact that there is no cure, and I can't gamble on the fact that one will come later, how do I deal with the fact that my child's life could be taken away at the moment they are reaching adulthood, finding a mate, a life purpose, or their passion at work? That is what breaks my heart to no end.
You deal with it the same way those parents who have kids with Leukemia, who die from Sudden Infant Death Syndrome, who are born with a heart malformation, etc etc.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
You deal with it the same way those parents who have kids with Leukemia, who die from Sudden Infant Death Syndrome, who are born with a heart malformation, etc etc.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
You deal with it the same way those parents who have kids with Leukemia, who die from Sudden Infant Death Syndrome, who are born with a heart malformation, etc etc.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
You deal with it the same way those parents who have kids with Leukemia, who die from Sudden Infant Death Syndrome, who are born with a heart malformation, etc etc.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
Don't underestimate the powerful, positive impact your child could have on this planet.
And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
You deal with it the same way those parents who have kids with Leukemia, who die from Sudden Infant Death Syndrome, who are born with a heart malformation, etc etc.
<br />
<br />The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
<br />
<br />Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
<br />
<br />Don't underestimate the powerful, positive impact your child could have on this planet.
<br />
<br />And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
<br />
<br />The point is that there are so many things that can happen to kids that can take them away prematurely. CF is by far not the only culprit. But it certainly doesn't make our lives less valuable. And you certainly don't have to reach adulthood to have a purpose for your life.
<br />
<br />Your little baby deserves to be on this planet just as much as another baby without CF. And as my wise mom always tells me, the future never turns out how you think it will. You may envision your baby's life to be a certain way, but as you know from life experience, things rarely turn out the way you imagine (usually for the better).
<br />
<br />Don't underestimate the powerful, positive impact your child could have on this planet.
<br />
<br />And on a side note, I'm generally pretty pessimistic about drug development but PTC124 is one that I'm willing to bet large amounts of money will come to the market and make a huge difference.
To use your own words.... doesn't it also <i>break your heart to no end </i>to not give you and your baby a chance at life? <i>How can you gamble on the fact </i>that they may lead a near normal life for a very long time and/or a completely normal (take a pill everyday) life when the PTC124 is approved?
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
To use your own words.... doesn't it also <i>break your heart to no end </i>to not give you and your baby a chance at life? <i>How can you gamble on the fact </i>that they may lead a near normal life for a very long time and/or a completely normal (take a pill everyday) life when the PTC124 is approved?
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
To use your own words.... doesn't it also <i>break your heart to no end </i>to not give you and your baby a chance at life? <i>How can you gamble on the fact </i>that they may lead a near normal life for a very long time and/or a completely normal (take a pill everyday) life when the PTC124 is approved?
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
To use your own words.... doesn't it also <i>break your heart to no end </i>to not give you and your baby a chance at life? <i>How can you gamble on the fact </i>that they may lead a near normal life for a very long time and/or a completely normal (take a pill everyday) life when the PTC124 is approved?
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
To use your own words.... doesn't it also <i>break your heart to no end </i>to not give you and your baby a chance at life? <i>How can you gamble on the fact </i>that they may lead a near normal life for a very long time and/or a completely normal (take a pill everyday) life when the PTC124 is approved?
<br />
<br />I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
<br />
<br />I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
<br />
<br />I second those thoughts of NoExcuses.... and I'm pretty sure the PTC124 is only a year or two away isn't it? You stand a good possibility of not having any symptoms show up for several years too, who knows... nobody can tell you for sure... but is the glass half empty or half full?
<br />
<br />I still say that knowing your child's gene mutation includes an x type gene is huge, because of the PTC124 coming into play soon. <b>Also don't be so sure of what age your child will die or even if it will be because of CF. I know of many people in their 60's and 70's with CF who are still doing fine </b>and they didn't even have the benefit of being diagnosed and/or get good treatments for the majority of their lives.
I just thought of something. I think you would really benefit from speaking with Dr. Warwick. He is <b> THE </b> thought leader in CF care......
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
I just thought of something. I think you would really benefit from speaking with Dr. Warwick. He is <b> THE </b> thought leader in CF care......
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
I just thought of something. I think you would really benefit from speaking with Dr. Warwick. He is <b> THE </b> thought leader in CF care......
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
I just thought of something. I think you would really benefit from speaking with Dr. Warwick. He is <b> THE </b> thought leader in CF care......
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
Check it out.
I just thought of something. I think you would really benefit from speaking with Dr. Warwick. He is <b> THE </b> thought leader in CF care......
<br />
<br />LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
<br />
<br />And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
<br />
<br />Check it out.
<br />
<br />LAX girl, read this article if you would. I think it will blow your mind. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>
<br />
<br />And give Dr. Warwick a call. Or email him. I think you would really enjoy talking to the man who had patients who died at age 5 40 years ago who are now living into their 50s and 60s at his clinic right now. He has revolutionized CF care and I traveled all the way to Minneapolis just to see him a year ago.
<br />
<br />Check it out.