I feel like they have given my daughter a death sentence

[brewz2]

I'm so sorry to hear you're going through a rough time, everyone on this site can relate to your feelings. I have a six year old and a two year old both with CF. When my six year old was diagnosed at two, the first people I called was a local chapter for CF - It was the hardest call I ever had to make b/c I was scared of what they would tell me, but after five minutes on the phone with the woman, I felt the life come back into me. She was filled with so much information, and was so caring and understanding, but more importantly she was filled with so much hope for the future of people with CF. CF has come so far over the past 30 years, and there's so much hope for a cure, and so many medicines that are helping add years to their life! You just need to take it day by day, and try not to worry about tomorrow's problems. There's a lot to learn, so don't be afraid to ask questions.

Tracey, mom to Sydney (6) and Seth (2), but w/cf, df508

 

[brewz2]

I'm so sorry to hear you're going through a rough time, everyone on this site can relate to your feelings. I have a six year old and a two year old both with CF. When my six year old was diagnosed at two, the first people I called was a local chapter for CF - It was the hardest call I ever had to make b/c I was scared of what they would tell me, but after five minutes on the phone with the woman, I felt the life come back into me. She was filled with so much information, and was so caring and understanding, but more importantly she was filled with so much hope for the future of people with CF. CF has come so far over the past 30 years, and there's so much hope for a cure, and so many medicines that are helping add years to their life! You just need to take it day by day, and try not to worry about tomorrow's problems. There's a lot to learn, so don't be afraid to ask questions.

Tracey, mom to Sydney (6) and Seth (2), but w/cf, df508

 

[brewz2]

I'm so sorry to hear you're going through a rough time, everyone on this site can relate to your feelings. I have a six year old and a two year old both with CF. When my six year old was diagnosed at two, the first people I called was a local chapter for CF - It was the hardest call I ever had to make b/c I was scared of what they would tell me, but after five minutes on the phone with the woman, I felt the life come back into me. She was filled with so much information, and was so caring and understanding, but more importantly she was filled with so much hope for the future of people with CF. CF has come so far over the past 30 years, and there's so much hope for a cure, and so many medicines that are helping add years to their life! You just need to take it day by day, and try not to worry about tomorrow's problems. There's a lot to learn, so don't be afraid to ask questions.

Tracey, mom to Sydney (6) and Seth (2), but w/cf, df508

 

[brewz2]

I'm so sorry to hear you're going through a rough time, everyone on this site can relate to your feelings. I have a six year old and a two year old both with CF. When my six year old was diagnosed at two, the first people I called was a local chapter for CF - It was the hardest call I ever had to make b/c I was scared of what they would tell me, but after five minutes on the phone with the woman, I felt the life come back into me. She was filled with so much information, and was so caring and understanding, but more importantly she was filled with so much hope for the future of people with CF. CF has come so far over the past 30 years, and there's so much hope for a cure, and so many medicines that are helping add years to their life! You just need to take it day by day, and try not to worry about tomorrow's problems. There's a lot to learn, so don't be afraid to ask questions.

Tracey, mom to Sydney (6) and Seth (2), but w/cf, df508

 

[brewz2]

I'm so sorry to hear you're going through a rough time, everyone on this site can relate to your feelings. I have a six year old and a two year old both with CF. When my six year old was diagnosed at two, the first people I called was a local chapter for CF - It was the hardest call I ever had to make b/c I was scared of what they would tell me, but after five minutes on the phone with the woman, I felt the life come back into me. She was filled with so much information, and was so caring and understanding, but more importantly she was filled with so much hope for the future of people with CF. CF has come so far over the past 30 years, and there's so much hope for a cure, and so many medicines that are helping add years to their life! You just need to take it day by day, and try not to worry about tomorrow's problems. There's a lot to learn, so don't be afraid to ask questions.

Tracey, mom to Sydney (6) and Seth (2), but w/cf, df508

 

[AbbysMama]

Welcome to the site. I'm so sorry to hear that your daughter has been diagnosed with CF; however, knowing the diagnosis means that she can be treated and will have the opportunity for a wonderful life. The diagnosis does knock the wind out of your sail and can be completely overwhelming. When you have time, do a search on the site for the information you need. You'll come across more stories of hope and success than those of sadness. This disease has its ups and downs, but we are here. There is always someone here to answer your questions and quell your fears.

Emily

 

[AbbysMama]

Welcome to the site. I'm so sorry to hear that your daughter has been diagnosed with CF; however, knowing the diagnosis means that she can be treated and will have the opportunity for a wonderful life. The diagnosis does knock the wind out of your sail and can be completely overwhelming. When you have time, do a search on the site for the information you need. You'll come across more stories of hope and success than those of sadness. This disease has its ups and downs, but we are here. There is always someone here to answer your questions and quell your fears.

Emily

 

[AbbysMama]

Welcome to the site. I'm so sorry to hear that your daughter has been diagnosed with CF; however, knowing the diagnosis means that she can be treated and will have the opportunity for a wonderful life. The diagnosis does knock the wind out of your sail and can be completely overwhelming. When you have time, do a search on the site for the information you need. You'll come across more stories of hope and success than those of sadness. This disease has its ups and downs, but we are here. There is always someone here to answer your questions and quell your fears.

Emily

 

[AbbysMama]

Welcome to the site. I'm so sorry to hear that your daughter has been diagnosed with CF; however, knowing the diagnosis means that she can be treated and will have the opportunity for a wonderful life. The diagnosis does knock the wind out of your sail and can be completely overwhelming. When you have time, do a search on the site for the information you need. You'll come across more stories of hope and success than those of sadness. This disease has its ups and downs, but we are here. There is always someone here to answer your questions and quell your fears.

Emily

 

[AbbysMama]

Welcome to the site. I'm so sorry to hear that your daughter has been diagnosed with CF; however, knowing the diagnosis means that she can be treated and will have the opportunity for a wonderful life. The diagnosis does knock the wind out of your sail and can be completely overwhelming. When you have time, do a search on the site for the information you need. You'll come across more stories of hope and success than those of sadness. This disease has its ups and downs, but we are here. There is always someone here to answer your questions and quell your fears.

Emily

 

[MargaritaChic]

I am sorry to hear about your daughter's diagnosis. I know firsthand that the news is difficult to hear.

My daughter, Emma, was born on 12/5/07. She is a bit younger than your daughter. I was told she had CF when she was 7 days old. It was a shock. I knew very little about CF. Like you, I thought it meant I would lose my beautiful little baby girl.

I have know come to know that early diagnosis allows us to do preventative care that will help our daughter to stay healthy longer and therefore may extend her life a great deal.

CF research has come very far in the last 30 years. The average life span for people with CF has went from just a few years old to 37 years old! Just imagine what the next 30 years of research will bring.

Your daughter (and mine) are very young. We can do so much to keep them happy and healthy. And we can hope that there will be a cure or gene therapy that will become available in their lifetime.

For now... live for today. Don't worry about what tomorrow may or may not bring. Enjoy your baby. Kiss her tiny fingers and toes. Enjoy her smiles. She will grow up fast. Enjoy the beautiful little girl she is today. No one knows what tomrrow will bring ... good or bad. So enjoy every moment. Your daughter wants, needs, deserves her mommy.

 

[MargaritaChic]

I am sorry to hear about your daughter's diagnosis. I know firsthand that the news is difficult to hear.

My daughter, Emma, was born on 12/5/07. She is a bit younger than your daughter. I was told she had CF when she was 7 days old. It was a shock. I knew very little about CF. Like you, I thought it meant I would lose my beautiful little baby girl.

I have know come to know that early diagnosis allows us to do preventative care that will help our daughter to stay healthy longer and therefore may extend her life a great deal.

CF research has come very far in the last 30 years. The average life span for people with CF has went from just a few years old to 37 years old! Just imagine what the next 30 years of research will bring.

Your daughter (and mine) are very young. We can do so much to keep them happy and healthy. And we can hope that there will be a cure or gene therapy that will become available in their lifetime.

For now... live for today. Don't worry about what tomorrow may or may not bring. Enjoy your baby. Kiss her tiny fingers and toes. Enjoy her smiles. She will grow up fast. Enjoy the beautiful little girl she is today. No one knows what tomrrow will bring ... good or bad. So enjoy every moment. Your daughter wants, needs, deserves her mommy.

 

[MargaritaChic]

I am sorry to hear about your daughter's diagnosis. I know firsthand that the news is difficult to hear.

My daughter, Emma, was born on 12/5/07. She is a bit younger than your daughter. I was told she had CF when she was 7 days old. It was a shock. I knew very little about CF. Like you, I thought it meant I would lose my beautiful little baby girl.

I have know come to know that early diagnosis allows us to do preventative care that will help our daughter to stay healthy longer and therefore may extend her life a great deal.

CF research has come very far in the last 30 years. The average life span for people with CF has went from just a few years old to 37 years old! Just imagine what the next 30 years of research will bring.

Your daughter (and mine) are very young. We can do so much to keep them happy and healthy. And we can hope that there will be a cure or gene therapy that will become available in their lifetime.

For now... live for today. Don't worry about what tomorrow may or may not bring. Enjoy your baby. Kiss her tiny fingers and toes. Enjoy her smiles. She will grow up fast. Enjoy the beautiful little girl she is today. No one knows what tomrrow will bring ... good or bad. So enjoy every moment. Your daughter wants, needs, deserves her mommy.

 

[MargaritaChic]

I am sorry to hear about your daughter's diagnosis. I know firsthand that the news is difficult to hear.

My daughter, Emma, was born on 12/5/07. She is a bit younger than your daughter. I was told she had CF when she was 7 days old. It was a shock. I knew very little about CF. Like you, I thought it meant I would lose my beautiful little baby girl.

I have know come to know that early diagnosis allows us to do preventative care that will help our daughter to stay healthy longer and therefore may extend her life a great deal.

CF research has come very far in the last 30 years. The average life span for people with CF has went from just a few years old to 37 years old! Just imagine what the next 30 years of research will bring.

Your daughter (and mine) are very young. We can do so much to keep them happy and healthy. And we can hope that there will be a cure or gene therapy that will become available in their lifetime.

For now... live for today. Don't worry about what tomorrow may or may not bring. Enjoy your baby. Kiss her tiny fingers and toes. Enjoy her smiles. She will grow up fast. Enjoy the beautiful little girl she is today. No one knows what tomrrow will bring ... good or bad. So enjoy every moment. Your daughter wants, needs, deserves her mommy.

 

[MargaritaChic]

I am sorry to hear about your daughter's diagnosis. I know firsthand that the news is difficult to hear.

My daughter, Emma, was born on 12/5/07. She is a bit younger than your daughter. I was told she had CF when she was 7 days old. It was a shock. I knew very little about CF. Like you, I thought it meant I would lose my beautiful little baby girl.

I have know come to know that early diagnosis allows us to do preventative care that will help our daughter to stay healthy longer and therefore may extend her life a great deal.

CF research has come very far in the last 30 years. The average life span for people with CF has went from just a few years old to 37 years old! Just imagine what the next 30 years of research will bring.

Your daughter (and mine) are very young. We can do so much to keep them happy and healthy. And we can hope that there will be a cure or gene therapy that will become available in their lifetime.

For now... live for today. Don't worry about what tomorrow may or may not bring. Enjoy your baby. Kiss her tiny fingers and toes. Enjoy her smiles. She will grow up fast. Enjoy the beautiful little girl she is today. No one knows what tomrrow will bring ... good or bad. So enjoy every moment. Your daughter wants, needs, deserves her mommy.

 

[welshwitch]

Your daughter DEFINITELY has a chance. This sounds a lot like what my parents went through when I was diagnosed in 1979. My parents were devastated, but don't think CF is a death sentance. There are many, many children, adults and older folks w/ CF who live amazingly healthy lives. I am one of these healthy adults. Do not give up hope--you just need some tools to deal with it!!

Feel free to send me a personal email too!!!! Strength to you!!!

Good luck and congrats on your new daughter!!!!!!!!!!

 

[welshwitch]

Your daughter DEFINITELY has a chance. This sounds a lot like what my parents went through when I was diagnosed in 1979. My parents were devastated, but don't think CF is a death sentance. There are many, many children, adults and older folks w/ CF who live amazingly healthy lives. I am one of these healthy adults. Do not give up hope--you just need some tools to deal with it!!

Feel free to send me a personal email too!!!! Strength to you!!!

Good luck and congrats on your new daughter!!!!!!!!!!

 

[welshwitch]

Your daughter DEFINITELY has a chance. This sounds a lot like what my parents went through when I was diagnosed in 1979. My parents were devastated, but don't think CF is a death sentance. There are many, many children, adults and older folks w/ CF who live amazingly healthy lives. I am one of these healthy adults. Do not give up hope--you just need some tools to deal with it!!

Feel free to send me a personal email too!!!! Strength to you!!!

Good luck and congrats on your new daughter!!!!!!!!!!

 

[welshwitch]

Your daughter DEFINITELY has a chance. This sounds a lot like what my parents went through when I was diagnosed in 1979. My parents were devastated, but don't think CF is a death sentance. There are many, many children, adults and older folks w/ CF who live amazingly healthy lives. I am one of these healthy adults. Do not give up hope--you just need some tools to deal with it!!

Feel free to send me a personal email too!!!! Strength to you!!!

Good luck and congrats on your new daughter!!!!!!!!!!

 

[welshwitch]

Your daughter DEFINITELY has a chance. This sounds a lot like what my parents went through when I was diagnosed in 1979. My parents were devastated, but don't think CF is a death sentance. There are many, many children, adults and older folks w/ CF who live amazingly healthy lives. I am one of these healthy adults. Do not give up hope--you just need some tools to deal with it!!

Feel free to send me a personal email too!!!! Strength to you!!!

Good luck and congrats on your new daughter!!!!!!!!!!