Children connecting with others with CF..

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SarahJean1976

New member
I just have to throw this out there... I think you, as parents, should keep things like the story about Anna out of "reach" for our little ones with CF... I know as a 32 year old with CF... videos like that have adverse effects for me... and I am 32 and understand life a little more...
This is just my experience and my thought on it... I cannot even IMAGINE if I watched something like Anna's Story when I was 8... I don't know that I would still be here... I remember being in my teens and having overheard nurses talking about me not being alive long enough to go to college and I remember thinking "what are they talking about"...
I hope and pray that there aren't parents out there that use "death" as motivation for doing meds or "death" as anything for your little ones... watching that video the other night PSET me so bad, I cannot even express it...
DOCTORS ARE NOT GOD AND THEY DON'T GET TO DECIDE WHEN WE DIE!!! When the lady started off her story with "This is Anna and she is dying!"... a part of me gets mad... no one should say that... no one knows that... they said that about me years ago and now here I sit... lung functions close to 70 and 32 years old...
I just wanted throw that out there... CFVOICE.com is a great site for kids... this site is more adult based, alot of DEATH on here... and I am not sure the effects it may have on our little CF warriors...
Please remeber this is just my opinion and I am not here to offend anyone, I just know what works for me...
Hope you are all well
xoxo
Sarah Jean
 
S

SarahJean1976

New member
I just have to throw this out there... I think you, as parents, should keep things like the story about Anna out of "reach" for our little ones with CF... I know as a 32 year old with CF... videos like that have adverse effects for me... and I am 32 and understand life a little more...
This is just my experience and my thought on it... I cannot even IMAGINE if I watched something like Anna's Story when I was 8... I don't know that I would still be here... I remember being in my teens and having overheard nurses talking about me not being alive long enough to go to college and I remember thinking "what are they talking about"...
I hope and pray that there aren't parents out there that use "death" as motivation for doing meds or "death" as anything for your little ones... watching that video the other night PSET me so bad, I cannot even express it...
DOCTORS ARE NOT GOD AND THEY DON'T GET TO DECIDE WHEN WE DIE!!! When the lady started off her story with "This is Anna and she is dying!"... a part of me gets mad... no one should say that... no one knows that... they said that about me years ago and now here I sit... lung functions close to 70 and 32 years old...
I just wanted throw that out there... CFVOICE.com is a great site for kids... this site is more adult based, alot of DEATH on here... and I am not sure the effects it may have on our little CF warriors...
Please remeber this is just my opinion and I am not here to offend anyone, I just know what works for me...
Hope you are all well
xoxo
Sarah Jean
 
S

SarahJean1976

New member
I just have to throw this out there... I think you, as parents, should keep things like the story about Anna out of "reach" for our little ones with CF... I know as a 32 year old with CF... videos like that have adverse effects for me... and I am 32 and understand life a little more...
This is just my experience and my thought on it... I cannot even IMAGINE if I watched something like Anna's Story when I was 8... I don't know that I would still be here... I remember being in my teens and having overheard nurses talking about me not being alive long enough to go to college and I remember thinking "what are they talking about"...
I hope and pray that there aren't parents out there that use "death" as motivation for doing meds or "death" as anything for your little ones... watching that video the other night PSET me so bad, I cannot even express it...
DOCTORS ARE NOT GOD AND THEY DON'T GET TO DECIDE WHEN WE DIE!!! When the lady started off her story with "This is Anna and she is dying!"... a part of me gets mad... no one should say that... no one knows that... they said that about me years ago and now here I sit... lung functions close to 70 and 32 years old...
I just wanted throw that out there... CFVOICE.com is a great site for kids... this site is more adult based, alot of DEATH on here... and I am not sure the effects it may have on our little CF warriors...
Please remeber this is just my opinion and I am not here to offend anyone, I just know what works for me...
Hope you are all well
xoxo
Sarah Jean
 
S

SarahJean1976

New member
I just have to throw this out there... I think you, as parents, should keep things like the story about Anna out of "reach" for our little ones with CF... I know as a 32 year old with CF... videos like that have adverse effects for me... and I am 32 and understand life a little more...
This is just my experience and my thought on it... I cannot even IMAGINE if I watched something like Anna's Story when I was 8... I don't know that I would still be here... I remember being in my teens and having overheard nurses talking about me not being alive long enough to go to college and I remember thinking "what are they talking about"...
I hope and pray that there aren't parents out there that use "death" as motivation for doing meds or "death" as anything for your little ones... watching that video the other night PSET me so bad, I cannot even express it...
DOCTORS ARE NOT GOD AND THEY DON'T GET TO DECIDE WHEN WE DIE!!! When the lady started off her story with "This is Anna and she is dying!"... a part of me gets mad... no one should say that... no one knows that... they said that about me years ago and now here I sit... lung functions close to 70 and 32 years old...
I just wanted throw that out there... CFVOICE.com is a great site for kids... this site is more adult based, alot of DEATH on here... and I am not sure the effects it may have on our little CF warriors...
Please remeber this is just my opinion and I am not here to offend anyone, I just know what works for me...
Hope you are all well
xoxo
Sarah Jean
 
S

SarahJean1976

New member
I just have to throw this out there... I think you, as parents, should keep things like the story about Anna out of "reach" for our little ones with CF... I know as a 32 year old with CF... videos like that have adverse effects for me... and I am 32 and understand life a little more...
<br />This is just my experience and my thought on it... I cannot even IMAGINE if I watched something like Anna's Story when I was 8... I don't know that I would still be here... I remember being in my teens and having overheard nurses talking about me not being alive long enough to go to college and I remember thinking "what are they talking about"...
<br />I hope and pray that there aren't parents out there that use "death" as motivation for doing meds or "death" as anything for your little ones... watching that video the other night PSET me so bad, I cannot even express it...
<br />DOCTORS ARE NOT GOD AND THEY DON'T GET TO DECIDE WHEN WE DIE!!! When the lady started off her story with "This is Anna and she is dying!"... a part of me gets mad... no one should say that... no one knows that... they said that about me years ago and now here I sit... lung functions close to 70 and 32 years old...
<br />I just wanted throw that out there... CFVOICE.com is a great site for kids... this site is more adult based, alot of DEATH on here... and I am not sure the effects it may have on our little CF warriors...
<br />Please remeber this is just my opinion and I am not here to offend anyone, I just know what works for me...
<br />Hope you are all well
<br />xoxo
<br />Sarah Jean
 
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robert321

New member
there's a site called starbrightworld, i think the web address is starbrightworld.org, not sure, it is a site for teens with just whatever illness, there are a few people with cf on there, i used to go there every once in a while, it may still be a little old for an 8 year old but its really cool for like the 12-15 range
 
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robert321

New member
there's a site called starbrightworld, i think the web address is starbrightworld.org, not sure, it is a site for teens with just whatever illness, there are a few people with cf on there, i used to go there every once in a while, it may still be a little old for an 8 year old but its really cool for like the 12-15 range
 
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robert321

New member
there's a site called starbrightworld, i think the web address is starbrightworld.org, not sure, it is a site for teens with just whatever illness, there are a few people with cf on there, i used to go there every once in a while, it may still be a little old for an 8 year old but its really cool for like the 12-15 range
 
R

robert321

New member
there's a site called starbrightworld, i think the web address is starbrightworld.org, not sure, it is a site for teens with just whatever illness, there are a few people with cf on there, i used to go there every once in a while, it may still be a little old for an 8 year old but its really cool for like the 12-15 range
 
R

robert321

New member
there's a site called starbrightworld, i think the web address is starbrightworld.org, not sure, it is a site for teens with just whatever illness, there are a few people with cf on there, i used to go there every once in a while, it may still be a little old for an 8 year old but its really cool for like the 12-15 range
 
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