Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Is it just me..or over the last couple of years there seems to be more adults with CHARGE around..well that we know about... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Belinda, With the medical advances for the past 20 years many children who are born with CHARGE are now surviving. Years ago that was not true. Honestly it is a miracle that Patty is here. I guess the same is true for most adults. That's why so far there are only a few more. The few we hear about are either people who just learned they have CHARGE or maybe just learned about this list. I assume there are others that we don't know about including those who have CHARGE that are on the more severe side of the spectrum. I am glad to say that the few I know are quite content with their lives. You, Patty and the other adults we do know about and can communicate give guidance and hope for others. It is the parents of those needing more assistance that can give guidance and hope for others. Still all in all there are only a few adults at this time. That's changing soon as many teens are now going to be headed into adulthood. People should be aware because here they come! Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 there does seem to b more and more older than us than there used to be to > > Is it just me..or over the last couple of years there seems to be more > adults with CHARGE around..well that we know about... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 yeahs here comes all the chargers growing up > > Belinda, > > With the medical advances for the past 20 years many children who are born > > with CHARGE are now surviving. Years ago that was not true. Honestly it is > a > miracle that Patty is here. I guess the same is true for most adults. > That's why so far there are only a few more. The few we hear about are > either > people who just learned they have CHARGE or maybe just learned about this > list. > I assume there are others that we don't know about including those who > have > CHARGE that are on the more severe side of the spectrum. I am glad to say > that the few I know are quite content with their lives. > > You, Patty and the other adults we do know about and can communicate give > guidance and hope for others. It is the parents of those needing more > assistance that can give guidance and hope for others. > > Still all in all there are only a few adults at this time. That's changing > > soon as many teens are now going to be headed into adulthood. People > should > be aware because here they come! > > Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 It seems so Belinda - I think it's GREAT!!! www.chargesyndrome.info > > Is it just me..or over the last couple of years there seems to be more > adults with CHARGE around..well that we know about... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Hi , No, that doesn't make you sound bad. It's a very natural reaction. Labels do that-they lead us to expect sameness, and for you, it would be a very personal expectation. So, the truth of it points to the uniqueness of each of us, which is everywhere in life. There will always be someone with 'more of' or 'less than', of all things, for each of us. And it's fine and natural to be grateful for what we do have. When we realize what we do have, that we have been lucky or blessed, then we are strenghtened, and in strength we can be givers. They say it isn't what we have, but what we do with what we have, that makes up who we are, and is the unique gift that we bring to life, and the basis from which we love and appreciate one another. The world benefits each time one of us finds our gratitude, and our strength. ;-) in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I remember my mom telling me that when I was born, she knew of one case of a 14 year old girl who had CHARGE. I don't know who it was, but I didn't really know of any other cases until I did come to this yahoo group. When I saw pictures of all the kids with CHARGE, I sat back in shock because I realized that I had a real mild form while others had more severe health issues to deal with. It was sort of mind boggling. Does that make me sound bad? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 i felt excatly the same when I saw the pictures. Michele S Re:Adults with CHARGE I remember my mom telling me that when I was born, she knew of one case of a 14 year old girl who had CHARGE. I don't know who it was, but I didn't really know of any other cases until I did come to this yahoo group. When I saw pictures of all the kids with CHARGE, I sat back in shock because I realized that I had a real mild form while others had more severe health issues to deal with. It was sort of mind boggling. Does that make me sound bad? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 , I don't think this makes you sound bad at all. You are expressing your gratitude for your mild CHARGE and realizing the significant needs of others. I think it makes you look interested in your own diagnosis while trying to learn about the range of possiblities. pam Re:Adults with CHARGE I remember my mom telling me that when I was born, she knew of one case of a 14 year old girl who had CHARGE. I don't know who it was, but I didn't really know of any other cases until I did come to this yahoo group. When I saw pictures of all the kids with CHARGE, I sat back in shock because I realized that I had a real mild form while others had more severe health issues to deal with. It was sort of mind boggling. Does that make me sound bad? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Ive heard of this CHARGE person with a PHD...who is it? I know of two older ladies like over 50 (one isnt alive anymore) who only discovered they had CHARGE in the past 10 years.....They both have kids with CHARGE, one has two kids with CHARGE, but they never realised they had it.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Really, how do you found out about? I checked the CHARGE website all i see young people and i haven't see any older people over fourty. Michele S. Adults with CHARGE Is it just me..or over the last couple of years there seems to be more adults with CHARGE around..well that we know about... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 , I was preparing an anwer to your email and then read 's. I think she said it all. I would just like to add as someone who has mild forms of 3 disabilities that is can be both frustrating and at the same time gives us the ability to speak out for those who may have a more severe type of our disability and who may not be able to express themselves. G FL In a message dated 4/3/2007 1:23:06 P.M. Eastern Daylight Time, mdlinda@... writes: Hi , No, that doesn't make you sound bad. It's a very natural reaction. Labels do that-they lead us to expect sameness, and for you, it would be a very personal expectation. So, the truth of it points to the uniqueness of each of us, which is everywhere in life. There will always be someone with 'more of' or 'less than', of all things, for each of us. And it's fine and natural to be grateful for what we do have. When we realize what we do have, that we have been lucky or blessed, then we are strenghtened, and in strength we can be givers. They say it isn't what we have, but what we do with what we have, that makes up who we are, and is the unique gift that we bring to life, and the basis from which we love and appreciate one another. The world benefits each time one of us finds our gratitude, and our strength. ;-) in Ma. ******************************************<WBR>*********<WBR>*_http://www.aol. http_ (http://www.aol.com./) [Non-text portions of this message have been removed] ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 Michele i dont know of many over 40....The two i mentioned that found out they had charge in the last 10 years lived in Melbourne where i live and id met them lots , i guess it isnt a widely known thing.... There still isnt that many older people with CHARGE i guess, but people are living longer Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 bel if they r the ones that were on robs vidio i know them coz saw them on that > > > , I was preparing an anwer to your email and then read 's. I > > think she said it all. I would just like to add as someone who has mild > forms > of 3 disabilities that is can be both frustrating and at the same time > gives > us the ability to speak out for those who may have a more severe type of > our > disability and who may not be able to express themselves. G FL > > In a message dated 4/3/2007 1:23:06 P.M. Eastern Daylight Time, > mdlinda@... <mdlinda%40aol.com> writes: > > Hi , > No, that doesn't make you sound bad. It's a very natural reaction. > Labels do that-they lead us to expect sameness, and for you, it would > be a very personal expectation. > So, the truth of it points to the uniqueness of each of us, which is > everywhere > in life. > There will always be someone with 'more of' or 'less than', of all things, > > for > each of us. > And it's fine and natural to be grateful for what we do have. When we > realize what > we do have, that we have been lucky or blessed, then we are strenghtened, > and in strength > we can be givers. > > They say it isn't what we have, but what we do with what we have, that > makes > up who we are, and is the unique gift that we bring to life, and the basis > > from > which we love and appreciate one another. > > The world benefits each time one of us finds our gratitude, and our > strength. > > ;-) > in Ma. > > ******************************************<WBR>*********<WBR>*_ > http://www.aol. > http_ (http://www.aol.com./) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 Ellen...If you read my email properly, i was talking about OLD people..well, not OLD but people over 40 > > bel if they r the ones that were on robs vidio i know them coz saw them > on > that > > On 05/04/07, rgoodlobby@... <rgoodlobby%40aol.com> <rgoodlobby@...<rgoodlobby%40aol.com>> > wrote: > > > > > > , I was preparing an anwer to your email and then read 's. > I > > > > think she said it all. I would just like to add as someone who has mild > > forms > > of 3 disabilities that is can be both frustrating and at the same time > > gives > > us the ability to speak out for those who may have a more severe type of > > our > > disability and who may not be able to express themselves. G FL > > > > In a message dated 4/3/2007 1:23:06 P.M. Eastern Daylight Time, > > mdlinda@... <mdlinda%40aol.com> <mdlinda%40aol.com> writes: > > > > Hi , > > No, that doesn't make you sound bad. It's a very natural reaction. > > Labels do that-they lead us to expect sameness, and for you, it would > > be a very personal expectation. > > So, the truth of it points to the uniqueness of each of us, which is > > everywhere > > in life. > > There will always be someone with 'more of' or 'less than', of all > things, > > > > for > > each of us. > > And it's fine and natural to be grateful for what we do have. When we > > realize what > > we do have, that we have been lucky or blessed, then we are > strenghtened, > > and in strength > > we can be givers. > > > > They say it isn't what we have, but what we do with what we have, that > > makes > > up who we are, and is the unique gift that we bring to life, and the > basis > > > > from > > which we love and appreciate one another. > > > > The world benefits each time one of us finds our gratitude, and our > > strength. > > > > ;-) > > in Ma. > > > > ******************************************<WBR>*********<WBR>*_ > > http://www.aol. > > http_ (http://www.aol.com./) > > > > Quote Link to comment Share on other sites More sharing options...
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