Terminating pregnancy?

[MargaritaChic]

It sounds like your child has the same mutations as my daughter (born 12/05/07). We found out when she was 7 days old that she has CF. It was devistating news.

Do you know much about CF? Do you know anyone with CF? I did not know much about it until after my daughter's diagnosis. I thought she would be a sick kid and die very young. I have found out that is not necessarily the case.

There are so many therapies available today that your child can start as soon as he/she is born that will help him/her have a long, happy, and healthy life.

Plus from what you have told us, one of your daughter's mutations is called a nonsense mutation. These are mutations that have an X at the end of their name. There is a drug (PTC124) that is in stage 2 trials that could be a 'cure' for people with nonsense mutations. I have read that if it gets FDA Approval the drug could possibly be available as soon as 2009!

There are many other therapies that your child can start at birth to help keep him/her healthy (enzymes, Chest therapy, nebulizer treatments, etc.)

What I am trying to tell you is that there is hope for your child. Having CF is not the death sentence that it was 20, 30 ... years ago. There are people on this board whose parents were told their child would not live to be teenagers. These days the median life expectancy is 38 years old! There are people on this board who are in their 20's, 30's, 40's, 50's and they did NOT have the therapies available to them as children that your child will have!

My advice to you... Contact a CF Clinic and speak to someone about what CF is and what your child's life would consist of having CF. Or call the Cystic Fibrosis Foundation asn see if you can speak to someone 1-800-344-4823.

No one would chose to be born with CF. No one would chose for their child to have CF. But it happens and many many people (30,000 Americans?) live with it everday. It is not always easy, but it is not always hard either.

Find out all of the facts before you make any decision.

Please let me know if you have any questions. I will do my best to help you. (hugs)

 

[MargaritaChic]

It sounds like your child has the same mutations as my daughter (born 12/05/07). We found out when she was 7 days old that she has CF. It was devistating news.

Do you know much about CF? Do you know anyone with CF? I did not know much about it until after my daughter's diagnosis. I thought she would be a sick kid and die very young. I have found out that is not necessarily the case.

There are so many therapies available today that your child can start as soon as he/she is born that will help him/her have a long, happy, and healthy life.

Plus from what you have told us, one of your daughter's mutations is called a nonsense mutation. These are mutations that have an X at the end of their name. There is a drug (PTC124) that is in stage 2 trials that could be a 'cure' for people with nonsense mutations. I have read that if it gets FDA Approval the drug could possibly be available as soon as 2009!

There are many other therapies that your child can start at birth to help keep him/her healthy (enzymes, Chest therapy, nebulizer treatments, etc.)

What I am trying to tell you is that there is hope for your child. Having CF is not the death sentence that it was 20, 30 ... years ago. There are people on this board whose parents were told their child would not live to be teenagers. These days the median life expectancy is 38 years old! There are people on this board who are in their 20's, 30's, 40's, 50's and they did NOT have the therapies available to them as children that your child will have!

My advice to you... Contact a CF Clinic and speak to someone about what CF is and what your child's life would consist of having CF. Or call the Cystic Fibrosis Foundation asn see if you can speak to someone 1-800-344-4823.

No one would chose to be born with CF. No one would chose for their child to have CF. But it happens and many many people (30,000 Americans?) live with it everday. It is not always easy, but it is not always hard either.

Find out all of the facts before you make any decision.

Please let me know if you have any questions. I will do my best to help you. (hugs)

 

[MargaritaChic]

It sounds like your child has the same mutations as my daughter (born 12/05/07). We found out when she was 7 days old that she has CF. It was devistating news.

Do you know much about CF? Do you know anyone with CF? I did not know much about it until after my daughter's diagnosis. I thought she would be a sick kid and die very young. I have found out that is not necessarily the case.

There are so many therapies available today that your child can start as soon as he/she is born that will help him/her have a long, happy, and healthy life.

Plus from what you have told us, one of your daughter's mutations is called a nonsense mutation. These are mutations that have an X at the end of their name. There is a drug (PTC124) that is in stage 2 trials that could be a 'cure' for people with nonsense mutations. I have read that if it gets FDA Approval the drug could possibly be available as soon as 2009!

There are many other therapies that your child can start at birth to help keep him/her healthy (enzymes, Chest therapy, nebulizer treatments, etc.)

What I am trying to tell you is that there is hope for your child. Having CF is not the death sentence that it was 20, 30 ... years ago. There are people on this board whose parents were told their child would not live to be teenagers. These days the median life expectancy is 38 years old! There are people on this board who are in their 20's, 30's, 40's, 50's and they did NOT have the therapies available to them as children that your child will have!

My advice to you... Contact a CF Clinic and speak to someone about what CF is and what your child's life would consist of having CF. Or call the Cystic Fibrosis Foundation asn see if you can speak to someone 1-800-344-4823.

No one would chose to be born with CF. No one would chose for their child to have CF. But it happens and many many people (30,000 Americans?) live with it everday. It is not always easy, but it is not always hard either.

Find out all of the facts before you make any decision.

Please let me know if you have any questions. I will do my best to help you. (hugs)

 

[MargaritaChic]

It sounds like your child has the same mutations as my daughter (born 12/05/07). We found out when she was 7 days old that she has CF. It was devistating news.

Do you know much about CF? Do you know anyone with CF? I did not know much about it until after my daughter's diagnosis. I thought she would be a sick kid and die very young. I have found out that is not necessarily the case.

There are so many therapies available today that your child can start as soon as he/she is born that will help him/her have a long, happy, and healthy life.

Plus from what you have told us, one of your daughter's mutations is called a nonsense mutation. These are mutations that have an X at the end of their name. There is a drug (PTC124) that is in stage 2 trials that could be a 'cure' for people with nonsense mutations. I have read that if it gets FDA Approval the drug could possibly be available as soon as 2009!

There are many other therapies that your child can start at birth to help keep him/her healthy (enzymes, Chest therapy, nebulizer treatments, etc.)

What I am trying to tell you is that there is hope for your child. Having CF is not the death sentence that it was 20, 30 ... years ago. There are people on this board whose parents were told their child would not live to be teenagers. These days the median life expectancy is 38 years old! There are people on this board who are in their 20's, 30's, 40's, 50's and they did NOT have the therapies available to them as children that your child will have!

My advice to you... Contact a CF Clinic and speak to someone about what CF is and what your child's life would consist of having CF. Or call the Cystic Fibrosis Foundation asn see if you can speak to someone 1-800-344-4823.

No one would chose to be born with CF. No one would chose for their child to have CF. But it happens and many many people (30,000 Americans?) live with it everday. It is not always easy, but it is not always hard either.

Find out all of the facts before you make any decision.

Please let me know if you have any questions. I will do my best to help you. (hugs)

 

[MargaritaChic]

It sounds like your child has the same mutations as my daughter (born 12/05/07). We found out when she was 7 days old that she has CF. It was devistating news.
<br />
<br />Do you know much about CF? Do you know anyone with CF? I did not know much about it until after my daughter's diagnosis. I thought she would be a sick kid and die very young. I have found out that is not necessarily the case.
<br />
<br />There are so many therapies available today that your child can start as soon as he/she is born that will help him/her have a long, happy, and healthy life.
<br />
<br />Plus from what you have told us, one of your daughter's mutations is called a nonsense mutation. These are mutations that have an X at the end of their name. There is a drug (PTC124) that is in stage 2 trials that could be a 'cure' for people with nonsense mutations. I have read that if it gets FDA Approval the drug could possibly be available as soon as 2009!
<br />
<br />There are many other therapies that your child can start at birth to help keep him/her healthy (enzymes, Chest therapy, nebulizer treatments, etc.)
<br />
<br />What I am trying to tell you is that there is hope for your child. Having CF is not the death sentence that it was 20, 30 ... years ago. There are people on this board whose parents were told their child would not live to be teenagers. These days the median life expectancy is 38 years old! There are people on this board who are in their 20's, 30's, 40's, 50's and they did NOT have the therapies available to them as children that your child will have!
<br />
<br />My advice to you... Contact a CF Clinic and speak to someone about what CF is and what your child's life would consist of having CF. Or call the Cystic Fibrosis Foundation asn see if you can speak to someone 1-800-344-4823.
<br />
<br />No one would chose to be born with CF. No one would chose for their child to have CF. But it happens and many many people (30,000 Americans?) live with it everday. It is not always easy, but it is not always hard either.
<br />
<br />Find out all of the facts before you make any decision.
<br />
<br />Please let me know if you have any questions. I will do my best to help you. (hugs)

 

[tara]

These are my thoughts, as an adult with CF (double delta F508).

There is a lot of research and progress toward a potential cure for patients with nonsense mutations (mutations ending in an X). I'm talking about specifically the drug trials associated with PTC124. Simply, my thought is, as far as research and treatment goes today, the "best" mutations to have right now are the nonsense mutations. (or at least one copy of the nonsense mutation) The nonsense mutations seem to be much closer to any treatment resembling a cure. But the fact does remain, today there is no cure for CF.

I can't tell you to terminate your pregnancy or not. I know some families do terminate, I know others don't. You have to do what is right for you.

 

[tara]

These are my thoughts, as an adult with CF (double delta F508).

There is a lot of research and progress toward a potential cure for patients with nonsense mutations (mutations ending in an X). I'm talking about specifically the drug trials associated with PTC124. Simply, my thought is, as far as research and treatment goes today, the "best" mutations to have right now are the nonsense mutations. (or at least one copy of the nonsense mutation) The nonsense mutations seem to be much closer to any treatment resembling a cure. But the fact does remain, today there is no cure for CF.

I can't tell you to terminate your pregnancy or not. I know some families do terminate, I know others don't. You have to do what is right for you.

 

[tara]

These are my thoughts, as an adult with CF (double delta F508).

There is a lot of research and progress toward a potential cure for patients with nonsense mutations (mutations ending in an X). I'm talking about specifically the drug trials associated with PTC124. Simply, my thought is, as far as research and treatment goes today, the "best" mutations to have right now are the nonsense mutations. (or at least one copy of the nonsense mutation) The nonsense mutations seem to be much closer to any treatment resembling a cure. But the fact does remain, today there is no cure for CF.

I can't tell you to terminate your pregnancy or not. I know some families do terminate, I know others don't. You have to do what is right for you.

 

[tara]

These are my thoughts, as an adult with CF (double delta F508).

There is a lot of research and progress toward a potential cure for patients with nonsense mutations (mutations ending in an X). I'm talking about specifically the drug trials associated with PTC124. Simply, my thought is, as far as research and treatment goes today, the "best" mutations to have right now are the nonsense mutations. (or at least one copy of the nonsense mutation) The nonsense mutations seem to be much closer to any treatment resembling a cure. But the fact does remain, today there is no cure for CF.

I can't tell you to terminate your pregnancy or not. I know some families do terminate, I know others don't. You have to do what is right for you.

 

[tara]

These are my thoughts, as an adult with CF (double delta F508).
<br />
<br />There is a lot of research and progress toward a potential cure for patients with nonsense mutations (mutations ending in an X). I'm talking about specifically the drug trials associated with PTC124. Simply, my thought is, as far as research and treatment goes today, the "best" mutations to have right now are the nonsense mutations. (or at least one copy of the nonsense mutation) The nonsense mutations seem to be much closer to any treatment resembling a cure. But the fact does remain, today there is no cure for CF.
<br />
<br />I can't tell you to terminate your pregnancy or not. I know some families do terminate, I know others don't. You have to do what is right for you.

 

[MelissaW]

I am the mother of a beautiful 19 month old little girl who has CF. She is doing so well and has adjusted to all her treatments like they are just part of any other day. Please keep in mind that a child diagnosed with CF today has such a great outlook. There are so many new drugs in the pipeline, life expectancy is constantly increasing, and we truly believe they will find a cure within my daughters lifetime. They are so close. Even the doctors at our CF Clinic talk about finding a cure and years ago they never even said the word cure. In ten years from now who knows what they will have out there. Look how it has changed in the past 10 years with the discovery a couple of new drugs that have done wonders for people with CF. It sounds like you have found a lot of positive things when doing your research, but please beware of the internet and some of the things you find. A lot of it is outdated and not true.

 

[MelissaW]

I am the mother of a beautiful 19 month old little girl who has CF. She is doing so well and has adjusted to all her treatments like they are just part of any other day. Please keep in mind that a child diagnosed with CF today has such a great outlook. There are so many new drugs in the pipeline, life expectancy is constantly increasing, and we truly believe they will find a cure within my daughters lifetime. They are so close. Even the doctors at our CF Clinic talk about finding a cure and years ago they never even said the word cure. In ten years from now who knows what they will have out there. Look how it has changed in the past 10 years with the discovery a couple of new drugs that have done wonders for people with CF. It sounds like you have found a lot of positive things when doing your research, but please beware of the internet and some of the things you find. A lot of it is outdated and not true.

 

[MelissaW]

I am the mother of a beautiful 19 month old little girl who has CF. She is doing so well and has adjusted to all her treatments like they are just part of any other day. Please keep in mind that a child diagnosed with CF today has such a great outlook. There are so many new drugs in the pipeline, life expectancy is constantly increasing, and we truly believe they will find a cure within my daughters lifetime. They are so close. Even the doctors at our CF Clinic talk about finding a cure and years ago they never even said the word cure. In ten years from now who knows what they will have out there. Look how it has changed in the past 10 years with the discovery a couple of new drugs that have done wonders for people with CF. It sounds like you have found a lot of positive things when doing your research, but please beware of the internet and some of the things you find. A lot of it is outdated and not true.

 

[MelissaW]

I am the mother of a beautiful 19 month old little girl who has CF. She is doing so well and has adjusted to all her treatments like they are just part of any other day. Please keep in mind that a child diagnosed with CF today has such a great outlook. There are so many new drugs in the pipeline, life expectancy is constantly increasing, and we truly believe they will find a cure within my daughters lifetime. They are so close. Even the doctors at our CF Clinic talk about finding a cure and years ago they never even said the word cure. In ten years from now who knows what they will have out there. Look how it has changed in the past 10 years with the discovery a couple of new drugs that have done wonders for people with CF. It sounds like you have found a lot of positive things when doing your research, but please beware of the internet and some of the things you find. A lot of it is outdated and not true.

 

[MelissaW]

I am the mother of a beautiful 19 month old little girl who has CF. She is doing so well and has adjusted to all her treatments like they are just part of any other day. Please keep in mind that a child diagnosed with CF today has such a great outlook. There are so many new drugs in the pipeline, life expectancy is constantly increasing, and we truly believe they will find a cure within my daughters lifetime. They are so close. Even the doctors at our CF Clinic talk about finding a cure and years ago they never even said the word cure. In ten years from now who knows what they will have out there. Look how it has changed in the past 10 years with the discovery a couple of new drugs that have done wonders for people with CF. It sounds like you have found a lot of positive things when doing your research, but please beware of the internet and some of the things you find. A lot of it is outdated and not true.

 

[JORDYSMOM]

I'm sure you are very afraid & confused right now. I'm sorry you are facing this uncertainty. I agree with Mel that this is a very personal choice. I also agree with Mel that you will get some very strong responses and opinions. That being said, I don't know any people with CF who absolutely wish they hadn't been born. I'm not saying they don't exist, but I've not met them.

We have members here who are living very full and productive lives. As Mel mentioned, there are members of this site (with CF) who are lawyers, teachers, scientists, writers, nurses, massage therapists, business owners, and every profession imaginable.

My son, who has CF, is 17 years old. He is a senior in highschool, and he works a full-time job. He goes to school half a day, and works, which is part of his grade for his "on the job training" class. He has played baseball and ran track all of his life. He is just like any other kid, except he has to work a little harder to take care of his health than most of his peers. I can't imagine not having had this awesome individual in my life.

Having an illness such as CF gives you something that a lot of people are never fortunate enough to experience. I know that sounds crazy, but it's true. CF may take a lot from you, but it certainly gives you a better perspective of what's important in life. CF makes you so much more appreciative of the little things, and it absolutely makes you strong! My family would not trade our life, including the CF, for anyone else's in the world.

I do want to say welcome to the site. This is a great place for support and information. Also, please make sure that, while researching CF, that you get up-to-date, accurate information. There is so much out there which is out-dated, and flat out incorrect. Also, most regular doctors (MD's/OB's etc) don't know enough about CF to advise anyone. I'd contact your local CF clinic, and talk with them. They will have a lot of helpful information for you.

I wish the very best for you and your husband.

Stacey

 

[JORDYSMOM]

I'm sure you are very afraid & confused right now. I'm sorry you are facing this uncertainty. I agree with Mel that this is a very personal choice. I also agree with Mel that you will get some very strong responses and opinions. That being said, I don't know any people with CF who absolutely wish they hadn't been born. I'm not saying they don't exist, but I've not met them.

We have members here who are living very full and productive lives. As Mel mentioned, there are members of this site (with CF) who are lawyers, teachers, scientists, writers, nurses, massage therapists, business owners, and every profession imaginable.

My son, who has CF, is 17 years old. He is a senior in highschool, and he works a full-time job. He goes to school half a day, and works, which is part of his grade for his "on the job training" class. He has played baseball and ran track all of his life. He is just like any other kid, except he has to work a little harder to take care of his health than most of his peers. I can't imagine not having had this awesome individual in my life.

Having an illness such as CF gives you something that a lot of people are never fortunate enough to experience. I know that sounds crazy, but it's true. CF may take a lot from you, but it certainly gives you a better perspective of what's important in life. CF makes you so much more appreciative of the little things, and it absolutely makes you strong! My family would not trade our life, including the CF, for anyone else's in the world.

I do want to say welcome to the site. This is a great place for support and information. Also, please make sure that, while researching CF, that you get up-to-date, accurate information. There is so much out there which is out-dated, and flat out incorrect. Also, most regular doctors (MD's/OB's etc) don't know enough about CF to advise anyone. I'd contact your local CF clinic, and talk with them. They will have a lot of helpful information for you.

I wish the very best for you and your husband.

Stacey

 

[JORDYSMOM]

I'm sure you are very afraid & confused right now. I'm sorry you are facing this uncertainty. I agree with Mel that this is a very personal choice. I also agree with Mel that you will get some very strong responses and opinions. That being said, I don't know any people with CF who absolutely wish they hadn't been born. I'm not saying they don't exist, but I've not met them.

We have members here who are living very full and productive lives. As Mel mentioned, there are members of this site (with CF) who are lawyers, teachers, scientists, writers, nurses, massage therapists, business owners, and every profession imaginable.

My son, who has CF, is 17 years old. He is a senior in highschool, and he works a full-time job. He goes to school half a day, and works, which is part of his grade for his "on the job training" class. He has played baseball and ran track all of his life. He is just like any other kid, except he has to work a little harder to take care of his health than most of his peers. I can't imagine not having had this awesome individual in my life.

Having an illness such as CF gives you something that a lot of people are never fortunate enough to experience. I know that sounds crazy, but it's true. CF may take a lot from you, but it certainly gives you a better perspective of what's important in life. CF makes you so much more appreciative of the little things, and it absolutely makes you strong! My family would not trade our life, including the CF, for anyone else's in the world.

I do want to say welcome to the site. This is a great place for support and information. Also, please make sure that, while researching CF, that you get up-to-date, accurate information. There is so much out there which is out-dated, and flat out incorrect. Also, most regular doctors (MD's/OB's etc) don't know enough about CF to advise anyone. I'd contact your local CF clinic, and talk with them. They will have a lot of helpful information for you.

I wish the very best for you and your husband.

Stacey

 

[JORDYSMOM]

I'm sure you are very afraid & confused right now. I'm sorry you are facing this uncertainty. I agree with Mel that this is a very personal choice. I also agree with Mel that you will get some very strong responses and opinions. That being said, I don't know any people with CF who absolutely wish they hadn't been born. I'm not saying they don't exist, but I've not met them.

We have members here who are living very full and productive lives. As Mel mentioned, there are members of this site (with CF) who are lawyers, teachers, scientists, writers, nurses, massage therapists, business owners, and every profession imaginable.

My son, who has CF, is 17 years old. He is a senior in highschool, and he works a full-time job. He goes to school half a day, and works, which is part of his grade for his "on the job training" class. He has played baseball and ran track all of his life. He is just like any other kid, except he has to work a little harder to take care of his health than most of his peers. I can't imagine not having had this awesome individual in my life.

Having an illness such as CF gives you something that a lot of people are never fortunate enough to experience. I know that sounds crazy, but it's true. CF may take a lot from you, but it certainly gives you a better perspective of what's important in life. CF makes you so much more appreciative of the little things, and it absolutely makes you strong! My family would not trade our life, including the CF, for anyone else's in the world.

I do want to say welcome to the site. This is a great place for support and information. Also, please make sure that, while researching CF, that you get up-to-date, accurate information. There is so much out there which is out-dated, and flat out incorrect. Also, most regular doctors (MD's/OB's etc) don't know enough about CF to advise anyone. I'd contact your local CF clinic, and talk with them. They will have a lot of helpful information for you.

I wish the very best for you and your husband.

Stacey

 

[JORDYSMOM]

I'm sure you are very afraid & confused right now. I'm sorry you are facing this uncertainty. I agree with Mel that this is a very personal choice. I also agree with Mel that you will get some very strong responses and opinions. That being said, I don't know any people with CF who absolutely wish they hadn't been born. I'm not saying they don't exist, but I've not met them.
<br />
<br />We have members here who are living very full and productive lives. As Mel mentioned, there are members of this site (with CF) who are lawyers, teachers, scientists, writers, nurses, massage therapists, business owners, and every profession imaginable.
<br />
<br />My son, who has CF, is 17 years old. He is a senior in highschool, and he works a full-time job. He goes to school half a day, and works, which is part of his grade for his "on the job training" class. He has played baseball and ran track all of his life. He is just like any other kid, except he has to work a little harder to take care of his health than most of his peers. I can't imagine not having had this awesome individual in my life.
<br />
<br />Having an illness such as CF gives you something that a lot of people are never fortunate enough to experience. I know that sounds crazy, but it's true. CF may take a lot from you, but it certainly gives you a better perspective of what's important in life. CF makes you so much more appreciative of the little things, and it absolutely makes you strong! My family would not trade our life, including the CF, for anyone else's in the world.
<br />
<br />I do want to say welcome to the site. This is a great place for support and information. Also, please make sure that, while researching CF, that you get up-to-date, accurate information. There is so much out there which is out-dated, and flat out incorrect. Also, most regular doctors (MD's/OB's etc) don't know enough about CF to advise anyone. I'd contact your local CF clinic, and talk with them. They will have a lot of helpful information for you.
<br />
<br />I wish the very best for you and your husband.
<br />
<br />Stacey