Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 , Yes there are other families out there who have more than one child with CHARGE. I know at least one set of twins and several other families who have children of differing ages who have CHARGE. Kennedy's Mom (www.chargesyndrome.info) > > Some time ago there were several massage's about adults with charge. > > The question I have is the next : > Are there more persons that are parents of one or more children with > charge. > I am 47 years and have two kids with charge one girl of 11 year and a > boy of 7 year. > > Greetings > > de Roij Holland > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Hello. I do know of some people with more then one child with charge. With one family they are pretty sure the mum (who has died) had CHARGE too.. I know theres another family in sydney with 2 kids with CHARGE. the parents dont have it and one has it mild and one severe > > Some time ago there were several massage's about adults with charge. > > The question I have is the next : > Are there more persons that are parents of one or more children with > charge. > I am 47 years and have two kids with charge one girl of 11 year and a > boy of 7 year. > > Greetings > > de Roij Holland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 there is more than one here ill fwd ur email to one fam i no of > > Hello. I do know of some people with more then one child with charge. > With > one family they are pretty sure the mum (who has died) had CHARGE too.. > > I know theres another family in sydney with 2 kids with CHARGE. the > parents > dont have it and one has it mild and one severe > > On 5/14/07, looking80ab cgpderoij@... > > wrote: > > > > Some time ago there were several massage's about adults with charge. > > > > The question I have is the next : > > Are there more persons that are parents of one or more children with > > charge. > > I am 47 years and have two kids with charge one girl of 11 year and a > > boy of 7 year. > > > > Greetings > > > > de Roij Holland > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Ellen. I know theres more then one. Im thinking of the ones in sydney, that have 2 girls Yasmin and i think Renae....The other family i thinking of is in Melbourne with two boys who i think are both in there late teens or something..... > > there is more than one here ill fwd ur email to one fam i no of > > On 14/05/07, _Belinda _ belinda83au@... > > wrote: > > > > Hello. I do know of some people with more then one child with charge. > > With > > one family they are pretty sure the mum (who has died) had CHARGE too.. > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > parents > > dont have it and one has it mild and one severe > > > > On 5/14/07, looking80ab cgpderoij@... > > > wrote: > > > > > > Some time ago there were several massage's about adults with charge. > > > > > > The question I have is the next : > > > Are there more persons that are parents of one or more children with > > > charge. > > > I am 47 years and have two kids with charge one girl of 11 year and a > > > boy of 7 year. > > > > > > Greetings > > > > > > de Roij Holland > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 yes yasmin and rene i no the ones u mean i saw them not long ago the mothers still around was her i saw if thats the mother u meant but that was two years ago > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > that > have 2 girls Yasmin and i think Renae....The other family i thinking of is > in Melbourne with two boys who i think are both in there late teens or > something..... > > On 5/14/07, ellen howe ellen.howe@... > > wrote: > > > > there is more than one here ill fwd ur email to one fam i no of > > > > On 14/05/07, _Belinda _ belinda83au@... 40gmail.com>> > > wrote: > > > > > > Hello. I do know of some people with more then one child with charge. > > > With > > > one family they are pretty sure the mum (who has died) had CHARGE > too.. > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > parents > > > dont have it and one has it mild and one severe > > > > > > On 5/14/07, looking80ab cgpderoij@... > > > > wrote: > > > > > > > > Some time ago there were several massage's about adults with charge. > > > > > > > > The question I have is the next : > > > > Are there more persons that are parents of one or more children with > > > > charge. > > > > I am 47 years and have two kids with charge one girl of 11 year and > a > > > > boy of 7 year. > > > > > > > > Greetings > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Thank you for the conformation that I am not alone . But I think that Australia is a little far away from my country. Where I am looking for is the experience of other parents in the same situation as me. _____ From: CHARGE [mailto:CHARGE ] On Behalf Of ellen howe Sent: maandag 14 mei 2007 11:54 To: CHARGE Subject: Re: Parent with charge yes yasmin and rene i no the ones u mean i saw them not long ago the mothers still around was her i saw if thats the mother u meant but that was two years ago On 14/05/07, _Belinda _ gmail.com> wrote: > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > that > have 2 girls Yasmin and i think Renae....The other family i thinking of is > in Melbourne with two boys who i think are both in there late teens or > something..... > > On 5/14/07, ellen howe com > > wrote: > > > > there is more than one here ill fwd ur email to one fam i no of > > > > On 14/05/07, _Belinda _ gmail.com 40gmail.com>> > > wrote: > > > > > > Hello. I do know of some people with more then one child with charge. > > > With > > > one family they are pretty sure the mum (who has died) had CHARGE > too.. > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > parents > > > dont have it and one has it mild and one severe > > > > > > On 5/14/07, looking80ab nl > > > > wrote: > > > > > > > > Some time ago there were several massage's about adults with charge. > > > > > > > > The question I have is the next : > > > > Are there more persons that are parents of one or more children with > > > > charge. > > > > I am 47 years and have two kids with charge one girl of 11 year and > a > > > > boy of 7 year. > > > > > > > > Greetings > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 , I'm sorry my geography is weak but the closest family I know of (they only have one child with CHARGE) is in Belgium. Glad you found the listserv, though! I would love to hear more about your kids. It must be quite challenging with two. Kennedy's Mom (www.chargesyndrome.info) > > Thank you for the conformation that I am not alone . > > But I think that Australia is a little far away from my country. > Where I am looking for is the experience of other parents in the same > situation as me. > > _____ > > From: CHARGE [mailto: > CHARGE ] On Behalf Of > ellen howe > Sent: maandag 14 mei 2007 11:54 > To: CHARGE > Subject: Re: Parent with charge > > yes yasmin and rene i no the ones u mean i saw them not long ago the > mothers > still around was her i saw if thats the mother u meant but that was two > years ago > > On 14/05/07, _Belinda _ > gmail.com> wrote: > > > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > > that > > have 2 girls Yasmin and i think Renae....The other family i thinking of > is > > in Melbourne with two boys who i think are both in there late teens or > > something..... > > > > On 5/14/07, ellen howe .howe%40gmail.com> > com > > > wrote: > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > On 14/05/07, _Belinda _ > gmail.com > 40gmail.com>> > > > wrote: > > > > > > > > Hello. I do know of some people with more then one child with > charge. > > > > With > > > > one family they are pretty sure the mum (who has died) had CHARGE > > too.. > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > > parents > > > > dont have it and one has it mild and one severe > > > > > > > > On 5/14/07, looking80ab 40solcon.nl> nl > > > > > > wrote: > > > > > > > > > > Some time ago there were several massage's about adults with > charge. > > > > > > > > > > The question I have is the next : > > > > > Are there more persons that are parents of one or more children > with > > > > > charge. > > > > > I am 47 years and have two kids with charge one girl of 11 year > and > > a > > > > > boy of 7 year. > > > > > > > > > > Greetings > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Hi , I don't know of any families from Holland, but you might check with Dr. Jan van Drjk from the Netherlands. He has done a presentation on challenging behavior in CHARGE. He might be able to put you in touch with someone on your side of the world. His email address back in 2003 is listed below. I hope it is still good. j.vdijk@... Baker - Mom to Jeff (22 yr. old CHARGEr), Steve 24, happily married and expecting a little boy in July, and others married with children of their own, providing me with 6 handsome and active grandsons, and two beautiful curly haired granddaughters - one a Special Angel with Cornelia deLange Syndrome (CdLS). http://www.caringbridge.org/me/jeffbaker From: de Roij To: CHARGE Sent: Monday, May 14, 2007 2:26 PM Subject: RE: Parent with charge Thank you for the conformation that I am not alone . But I think that Australia is a little far away from my country. Where I am looking for is the experience of other parents in the same situation as me. _____ From: CHARGE [mailto:CHARGE ] On Behalf Of ellen howe Sent: maandag 14 mei 2007 11:54 To: CHARGE Subject: Re: Parent with charge yes yasmin and rene i no the ones u mean i saw them not long ago the mothers still around was her i saw if thats the mother u meant but that was two years ago On 14/05/07, _Belinda _ gmail.com> wrote: > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > that > have 2 girls Yasmin and i think Renae....The other family i thinking of is > in Melbourne with two boys who i think are both in there late teens or > something..... > > On 5/14/07, ellen howe com > > wrote: > > > > there is more than one here ill fwd ur email to one fam i no of > > > > On 14/05/07, _Belinda _ gmail.com 40gmail.com>> > > wrote: > > > > > > Hello. I do know of some people with more then one child with charge. > > > With > > > one family they are pretty sure the mum (who has died) had CHARGE > too.. > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > parents > > > dont have it and one has it mild and one severe > > > > > > On 5/14/07, looking80ab nl > > > > wrote: > > > > > > > > Some time ago there were several massage's about adults with charge. > > > > > > > > The question I have is the next : > > > > Are there more persons that are parents of one or more children with > > > > charge. > > > > I am 47 years and have two kids with charge one girl of 11 year and > a > > > > boy of 7 year. > > > > > > > > Greetings > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Hi , We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. son both with CHARGE(and a couple of " non-CHARGErs " in between:). My e-mail address is:mcyoung6@.... There are only a couple of other families in the US w/ more than one(where the parents don't have CHARGE or they aren't twins) CHARGEr born to them that I know of. Neither my huband or I has CHARGE(we've even been tested for the gene) and our CHARGErs do have the mutation. Corrie Young > > Thank you for the conformation that I am not alone . > > But I think that Australia is a little far away from my country. > Where I am looking for is the experience of other parents in the same > situation as me. > > _____ > > From: CHARGE [mailto: > CHARGE ] On Behalf Of > ellen howe > Sent: maandag 14 mei 2007 11:54 > To: CHARGE > Subject: Re: Parent with charge > > yes yasmin and rene i no the ones u mean i saw them not long ago the > mothers > still around was her i saw if thats the mother u meant but that was two > years ago > > On 14/05/07, _Belinda _ > gmail.com> wrote: > > > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > > that > > have 2 girls Yasmin and i think Renae....The other family i thinking of > is > > in Melbourne with two boys who i think are both in there late teens or > > something..... > > > > On 5/14/07, ellen howe .howe%40gmail.com> > com > > > wrote: > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > On 14/05/07, _Belinda _ > gmail.com > 40gmail.com>> > > > wrote: > > > > > > > > Hello. I do know of some people with more then one child with > charge. > > > > With > > > > one family they are pretty sure the mum (who has died) had CHARGE > > too.. > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > > parents > > > > dont have it and one has it mild and one severe > > > > > > > > On 5/14/07, looking80ab 40solcon.nl> nl > > > > > > wrote: > > > > > > > > > > Some time ago there were several massage's about adults with > charge. > > > > > > > > > > The question I have is the next : > > > > > Are there more persons that are parents of one or more children > with > > > > > charge. > > > > > I am 47 years and have two kids with charge one girl of 11 year > and > > a > > > > > boy of 7 year. > > > > > > > > > > Greetings > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 corie i wondered if the boys had the gene i knew u didtn but wasnt so sure bout the boys felt they did > > Hi , > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. son > both with CHARGE(and a couple of " non-CHARGErs " in between:). My e-mail > address is:mcyoung6@... . There are only a > couple of other families in > the US w/ more than one(where the parents don't have CHARGE or they aren't > twins) CHARGEr born to them that I know of. > > Neither my huband or I has CHARGE(we've even been tested for the gene) and > our CHARGErs do have the mutation. > > Corrie Young > > On 5/14/07, de Roij cgpderoij@... > > wrote: > > > > Thank you for the conformation that I am not alone . > > > > But I think that Australia is a little far away from my country. > > Where I am looking for is the experience of other parents in the same > > situation as me. > > > > _____ > > > > From: CHARGE ps.com> [mailto: > > CHARGE ps.com>] On Behalf Of > > ellen howe > > Sent: maandag 14 mei 2007 11:54 > > To: CHARGE ps.com> > > Subject: Re: Parent with charge > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > mothers > > still around was her i saw if thats the mother u meant but that was two > > years ago > > > > On 14/05/07, _Belinda _ > > gmail.com> wrote: > > > > > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > > > that > > > have 2 girls Yasmin and i think Renae....The other family i thinking > of > > is > > > in Melbourne with two boys who i think are both in there late teens or > > > something..... > > > > > > On 5/14/07, ellen howe > .howe%40gmail.com> > > com > > > > wrote: > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > On 14/05/07, _Belinda _ %40gmail.com> > > gmail.com > > 40gmail.com>> > > > > wrote: > > > > > > > > > > Hello. I do know of some people with more then one child with > > charge. > > > > > With > > > > > one family they are pretty sure the mum (who has died) had CHARGE > > > too.. > > > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. > the > > > > > parents > > > > > dont have it and one has it mild and one severe > > > > > > > > > > On 5/14/07, looking80ab > 40solcon.nl> nl > > > > > > > > wrote: > > > > > > > > > > > > Some time ago there were several massage's about adults with > > charge. > > > > > > > > > > > > The question I have is the next : > > > > > > Are there more persons that are parents of one or more children > > with > > > > > > charge. > > > > > > I am 47 years and have two kids with charge one girl of 11 year > > and > > > a > > > > > > boy of 7 year. > > > > > > > > > > > > Greetings > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Yes Ellen, They finally found their mutation this past Fall after they obtained some new way to test a little better(I think something Connie figured out and shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. Have you participated in a study? Do you have a mutation? Corrie > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > sure > bout the boys felt they did > > On 15/05/07, Mike & Corrie Young mcyoung6@...> > wrote: > > > > Hi , > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > son > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My e-mail > > address is:mcyoung6@... . There are only a > > couple of other families in > > the US w/ more than one(where the parents don't have CHARGE or they > aren't > > twins) CHARGEr born to them that I know of. > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > and > > our CHARGErs do have the mutation. > > > > Corrie Young > > > > On 5/14/07, de Roij cgpderoij@... > > > wrote: > > > > > > Thank you for the conformation that I am not alone . > > > > > > But I think that Australia is a little far away from my country. > > > Where I am looking for is the experience of other parents in the same > > > situation as me. > > > > > > _____ > > > > > > From: CHARGE ps.com> > ps.com> [mailto: > > > CHARGE ps.com> > ps.com>] On Behalf Of > > > ellen howe > > > Sent: maandag 14 mei 2007 11:54 > > > To: CHARGE ps.com> > ps.com> > > > Subject: Re: Parent with charge > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > mothers > > > still around was her i saw if thats the mother u meant but that was > two > > > years ago > > > > > > On 14/05/07, _Belinda _ > > > gmail.com> wrote: > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > sydney, > > > > that > > > > have 2 girls Yasmin and i think Renae....The other family i thinking > > of > > > is > > > > in Melbourne with two boys who i think are both in there late teens > or > > > > something..... > > > > > > > > On 5/14/07, ellen howe > > .howe%40gmail.com> > > > com > > > > > wrote: > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > On 14/05/07, _Belinda _ > %40gmail.com> > > > gmail.com > > > 40gmail.com>> > > > > > wrote: > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > charge. > > > > > > With > > > > > > one family they are pretty sure the mum (who has died) had > CHARGE > > > > too.. > > > > > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. > > the > > > > > > parents > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > On 5/14/07, looking80ab > > > 40solcon.nl> nl > > > > > > > > > > wrote: > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > charge. > > > > > > > > > > > > > > The question I have is the next : > > > > > > > Are there more persons that are parents of one or more > children > > > with > > > > > > > charge. > > > > > > > I am 47 years and have two kids with charge one girl of 11 > year > > > and > > > > a > > > > > > > boy of 7 year. > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Yes Ellen, They finally found their mutation this past Fall after they obtained some new way to test a little better(I think something Connie figured out and shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. Have you participated in a study? Do you have a mutation? Corrie > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > sure > bout the boys felt they did > > On 15/05/07, Mike & Corrie Young mcyoung6@...> > wrote: > > > > Hi , > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > son > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My e-mail > > address is:mcyoung6@... . There are only a > > couple of other families in > > the US w/ more than one(where the parents don't have CHARGE or they > aren't > > twins) CHARGEr born to them that I know of. > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > and > > our CHARGErs do have the mutation. > > > > Corrie Young > > > > On 5/14/07, de Roij cgpderoij@... > > > wrote: > > > > > > Thank you for the conformation that I am not alone . > > > > > > But I think that Australia is a little far away from my country. > > > Where I am looking for is the experience of other parents in the same > > > situation as me. > > > > > > _____ > > > > > > From: CHARGE ps.com> > ps.com> [mailto: > > > CHARGE ps.com> > ps.com>] On Behalf Of > > > ellen howe > > > Sent: maandag 14 mei 2007 11:54 > > > To: CHARGE ps.com> > ps.com> > > > Subject: Re: Parent with charge > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > mothers > > > still around was her i saw if thats the mother u meant but that was > two > > > years ago > > > > > > On 14/05/07, _Belinda _ > > > gmail.com> wrote: > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > sydney, > > > > that > > > > have 2 girls Yasmin and i think Renae....The other family i thinking > > of > > > is > > > > in Melbourne with two boys who i think are both in there late teens > or > > > > something..... > > > > > > > > On 5/14/07, ellen howe > > .howe%40gmail.com> > > > com > > > > > wrote: > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > On 14/05/07, _Belinda _ > %40gmail.com> > > > gmail.com > > > 40gmail.com>> > > > > > wrote: > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > charge. > > > > > > With > > > > > > one family they are pretty sure the mum (who has died) had > CHARGE > > > > too.. > > > > > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. > > the > > > > > > parents > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > On 5/14/07, looking80ab > > > 40solcon.nl> nl > > > > > > > > > > wrote: > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > charge. > > > > > > > > > > > > > > The question I have is the next : > > > > > > > Are there more persons that are parents of one or more > children > > > with > > > > > > > charge. > > > > > > > I am 47 years and have two kids with charge one girl of 11 > year > > > and > > > > a > > > > > > > boy of 7 year. > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Yes Ellen, They finally found their mutation this past Fall after they obtained some new way to test a little better(I think something Connie figured out and shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. Have you participated in a study? Do you have a mutation? Corrie > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > sure > bout the boys felt they did > > On 15/05/07, Mike & Corrie Young mcyoung6@...> > wrote: > > > > Hi , > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > son > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My e-mail > > address is:mcyoung6@... . There are only a > > couple of other families in > > the US w/ more than one(where the parents don't have CHARGE or they > aren't > > twins) CHARGEr born to them that I know of. > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > and > > our CHARGErs do have the mutation. > > > > Corrie Young > > > > On 5/14/07, de Roij cgpderoij@... > > > wrote: > > > > > > Thank you for the conformation that I am not alone . > > > > > > But I think that Australia is a little far away from my country. > > > Where I am looking for is the experience of other parents in the same > > > situation as me. > > > > > > _____ > > > > > > From: CHARGE ps.com> > ps.com> [mailto: > > > CHARGE ps.com> > ps.com>] On Behalf Of > > > ellen howe > > > Sent: maandag 14 mei 2007 11:54 > > > To: CHARGE ps.com> > ps.com> > > > Subject: Re: Parent with charge > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > mothers > > > still around was her i saw if thats the mother u meant but that was > two > > > years ago > > > > > > On 14/05/07, _Belinda _ > > > gmail.com> wrote: > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > sydney, > > > > that > > > > have 2 girls Yasmin and i think Renae....The other family i thinking > > of > > > is > > > > in Melbourne with two boys who i think are both in there late teens > or > > > > something..... > > > > > > > > On 5/14/07, ellen howe > > .howe%40gmail.com> > > > com > > > > > wrote: > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > On 14/05/07, _Belinda _ > %40gmail.com> > > > gmail.com > > > 40gmail.com>> > > > > > wrote: > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > charge. > > > > > > With > > > > > > one family they are pretty sure the mum (who has died) had > CHARGE > > > > too.. > > > > > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. > > the > > > > > > parents > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > On 5/14/07, looking80ab > > > 40solcon.nl> nl > > > > > > > > > > wrote: > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > charge. > > > > > > > > > > > > > > The question I have is the next : > > > > > > > Are there more persons that are parents of one or more > children > > > with > > > > > > > charge. > > > > > > > I am 47 years and have two kids with charge one girl of 11 > year > > > and > > > > a > > > > > > > boy of 7 year. > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 i havent done it dotn t;hink there is way to do it out her in aus but i am so confident in having charge having had it my ole livfe LOL > > Yes Ellen, > > They finally found their mutation this past Fall after they obtained some > new way to test a little better(I think something Connie figured out and > shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. > > Have you participated in a study? Do you have a mutation? > > Corrie > > On 5/15/07, ellen howe ellen.howe@... > > wrote: > > > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > > sure > > bout the boys felt they did > > > > On 15/05/07, Mike & Corrie Young mcyoung6@... > > > > wrote: > > > > > > Hi , > > > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > > son > > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My > e-mail > > > address is:mcyoung6@... 40gmail.com>. There are only a > > > couple of other families in > > > the US w/ more than one(where the parents don't have CHARGE or they > > aren't > > > twins) CHARGEr born to them that I know of. > > > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > > and > > > our CHARGErs do have the mutation. > > > > > > Corrie Young > > > > > > On 5/14/07, de Roij cgpderoij@... > > > > wrote: > > > > > > > > Thank you for the conformation that I am not alone . > > > > > > > > But I think that Australia is a little far away from my country. > > > > Where I am looking for is the experience of other parents in the > same > > > > situation as me. > > > > > > > > _____ > > > > > > > > From: CHARGE ps.com> > ps.com> > > ps.com> [mailto: > > > > CHARGE ps.com> > ps.com> > > ps.com>] On Behalf Of > > > > ellen howe > > > > Sent: maandag 14 mei 2007 11:54 > > > > To: CHARGE ps.com> > ps.com> > > ps.com> > > > > Subject: Re: Parent with charge > > > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > > mothers > > > > still around was her i saw if thats the mother u meant but that was > > two > > > > years ago > > > > > > > > On 14/05/07, _Belinda _ %40gmail.com> > > > > gmail.com> wrote: > > > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > > sydney, > > > > > that > > > > > have 2 girls Yasmin and i think Renae....The other family i > thinking > > > of > > > > is > > > > > in Melbourne with two boys who i think are both in there late > teens > > or > > > > > something..... > > > > > > > > > > On 5/14/07, ellen howe > > > .howe%40gmail.com> > > > > com > > > > > > wrote: > > > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > > > On 14/05/07, _Belinda _ > > %40gmail.com> > > > > gmail.com > > > > 40gmail.com>> > > > > > > wrote: > > > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > > charge. > > > > > > > With > > > > > > > one family they are pretty sure the mum (who has died) had > > CHARGE > > > > > too.. > > > > > > > > > > > > > > I know theres another family in sydney with 2 kids with > CHARGE. > > > the > > > > > > > parents > > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > > > On 5/14/07, looking80ab > > > > > > 40solcon.nl> nl > > > > > > > > > > > > > wrote: > > > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > > charge. > > > > > > > > > > > > > > > > The question I have is the next : > > > > > > > > Are there more persons that are parents of one or more > > children > > > > with > > > > > > > > charge. > > > > > > > > I am 47 years and have two kids with charge one girl of 11 > > year > > > > and > > > > > a > > > > > > > > boy of 7 year. > > > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 i havent done it dotn t;hink there is way to do it out her in aus but i am so confident in having charge having had it my ole livfe LOL > > Yes Ellen, > > They finally found their mutation this past Fall after they obtained some > new way to test a little better(I think something Connie figured out and > shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. > > Have you participated in a study? Do you have a mutation? > > Corrie > > On 5/15/07, ellen howe ellen.howe@... > > wrote: > > > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > > sure > > bout the boys felt they did > > > > On 15/05/07, Mike & Corrie Young mcyoung6@... > > > > wrote: > > > > > > Hi , > > > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > > son > > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My > e-mail > > > address is:mcyoung6@... 40gmail.com>. There are only a > > > couple of other families in > > > the US w/ more than one(where the parents don't have CHARGE or they > > aren't > > > twins) CHARGEr born to them that I know of. > > > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > > and > > > our CHARGErs do have the mutation. > > > > > > Corrie Young > > > > > > On 5/14/07, de Roij cgpderoij@... > > > > wrote: > > > > > > > > Thank you for the conformation that I am not alone . > > > > > > > > But I think that Australia is a little far away from my country. > > > > Where I am looking for is the experience of other parents in the > same > > > > situation as me. > > > > > > > > _____ > > > > > > > > From: CHARGE ps.com> > ps.com> > > ps.com> [mailto: > > > > CHARGE ps.com> > ps.com> > > ps.com>] On Behalf Of > > > > ellen howe > > > > Sent: maandag 14 mei 2007 11:54 > > > > To: CHARGE ps.com> > ps.com> > > ps.com> > > > > Subject: Re: Parent with charge > > > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > > mothers > > > > still around was her i saw if thats the mother u meant but that was > > two > > > > years ago > > > > > > > > On 14/05/07, _Belinda _ %40gmail.com> > > > > gmail.com> wrote: > > > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > > sydney, > > > > > that > > > > > have 2 girls Yasmin and i think Renae....The other family i > thinking > > > of > > > > is > > > > > in Melbourne with two boys who i think are both in there late > teens > > or > > > > > something..... > > > > > > > > > > On 5/14/07, ellen howe > > > .howe%40gmail.com> > > > > com > > > > > > wrote: > > > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > > > On 14/05/07, _Belinda _ > > %40gmail.com> > > > > gmail.com > > > > 40gmail.com>> > > > > > > wrote: > > > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > > charge. > > > > > > > With > > > > > > > one family they are pretty sure the mum (who has died) had > > CHARGE > > > > > too.. > > > > > > > > > > > > > > I know theres another family in sydney with 2 kids with > CHARGE. > > > the > > > > > > > parents > > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > > > On 5/14/07, looking80ab > > > > > > 40solcon.nl> nl > > > > > > > > > > > > > wrote: > > > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > > charge. > > > > > > > > > > > > > > > > The question I have is the next : > > > > > > > > Are there more persons that are parents of one or more > > children > > > > with > > > > > > > > charge. > > > > > > > > I am 47 years and have two kids with charge one girl of 11 > > year > > > > and > > > > > a > > > > > > > > boy of 7 year. > > > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 i havent done it dotn t;hink there is way to do it out her in aus but i am so confident in having charge having had it my ole livfe LOL > > Yes Ellen, > > They finally found their mutation this past Fall after they obtained some > new way to test a little better(I think something Connie figured out and > shared w/ Baylor). So they both have the same mutation, exon 13 of CHD7. > > Have you participated in a study? Do you have a mutation? > > Corrie > > On 5/15/07, ellen howe ellen.howe@... > > wrote: > > > > corie i wondered if the boys had the gene i knew u didtn but wasnt so > > sure > > bout the boys felt they did > > > > On 15/05/07, Mike & Corrie Young mcyoung6@... > > > > wrote: > > > > > > Hi , > > > > > > We are a family w/ 2 CHARGERs. We have a 10 year old son and an 8 mo. > > son > > > both with CHARGE(and a couple of " non-CHARGErs " in between:). My > e-mail > > > address is:mcyoung6@... 40gmail.com>. There are only a > > > couple of other families in > > > the US w/ more than one(where the parents don't have CHARGE or they > > aren't > > > twins) CHARGEr born to them that I know of. > > > > > > Neither my huband or I has CHARGE(we've even been tested for the gene) > > and > > > our CHARGErs do have the mutation. > > > > > > Corrie Young > > > > > > On 5/14/07, de Roij cgpderoij@... > > > > wrote: > > > > > > > > Thank you for the conformation that I am not alone . > > > > > > > > But I think that Australia is a little far away from my country. > > > > Where I am looking for is the experience of other parents in the > same > > > > situation as me. > > > > > > > > _____ > > > > > > > > From: CHARGE ps.com> > ps.com> > > ps.com> [mailto: > > > > CHARGE ps.com> > ps.com> > > ps.com>] On Behalf Of > > > > ellen howe > > > > Sent: maandag 14 mei 2007 11:54 > > > > To: CHARGE ps.com> > ps.com> > > ps.com> > > > > Subject: Re: Parent with charge > > > > > > > > yes yasmin and rene i no the ones u mean i saw them not long ago the > > > > mothers > > > > still around was her i saw if thats the mother u meant but that was > > two > > > > years ago > > > > > > > > On 14/05/07, _Belinda _ %40gmail.com> > > > > gmail.com> wrote: > > > > > > > > > > Ellen. I know theres more then one. Im thinking of the ones in > > sydney, > > > > > that > > > > > have 2 girls Yasmin and i think Renae....The other family i > thinking > > > of > > > > is > > > > > in Melbourne with two boys who i think are both in there late > teens > > or > > > > > something..... > > > > > > > > > > On 5/14/07, ellen howe > > > .howe%40gmail.com> > > > > com > > > > > > wrote: > > > > > > > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > > > > > > > On 14/05/07, _Belinda _ > > %40gmail.com> > > > > gmail.com > > > > 40gmail.com>> > > > > > > wrote: > > > > > > > > > > > > > > Hello. I do know of some people with more then one child with > > > > charge. > > > > > > > With > > > > > > > one family they are pretty sure the mum (who has died) had > > CHARGE > > > > > too.. > > > > > > > > > > > > > > I know theres another family in sydney with 2 kids with > CHARGE. > > > the > > > > > > > parents > > > > > > > dont have it and one has it mild and one severe > > > > > > > > > > > > > > On 5/14/07, looking80ab > > > > > > 40solcon.nl> nl > > > > > > > > > > > > > wrote: > > > > > > > > > > > > > > > > Some time ago there were several massage's about adults with > > > > charge. > > > > > > > > > > > > > > > > The question I have is the next : > > > > > > > > Are there more persons that are parents of one or more > > children > > > > with > > > > > > > > charge. > > > > > > > > I am 47 years and have two kids with charge one girl of 11 > > year > > > > and > > > > > a > > > > > > > > boy of 7 year. > > > > > > > > > > > > > > > > Greetings > > > > > > > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 , It's indeed very challenging to have two kids with charge. Fortunately they have a very mild form of it. Some times it's also funny to see them do the things they do and that you can see that they act in the same way as I did when I was a kid. At the other side they give much pleasure with the things they do and how they are. _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Weir Sent: dinsdag 15 mei 2007 2:25 To: CHARGE Subject: Re: Parent with charge , I'm sorry my geography is weak but the closest family I know of (they only have one child with CHARGE) is in Belgium. Glad you found the listserv, though! I would love to hear more about your kids. It must be quite challenging with two. Kennedy's Mom (www.chargesyndrome.info) On 5/14/07, de Roij nl> wrote: > > Thank you for the conformation that I am not alone . > > But I think that Australia is a little far away from my country. > Where I am looking for is the experience of other parents in the same > situation as me. > > _____ > > From: CHARGE (AT) yahoogroups (DOT) com [mailto: > CHARGE (AT) yahoogroups (DOT) com ] On Behalf Of > ellen howe > Sent: maandag 14 mei 2007 11:54 > To: CHARGE (AT) yahoogroups (DOT) com > Subject: Re: Parent with charge > > yes yasmin and rene i no the ones u mean i saw them not long ago the > mothers > still around was her i saw if thats the mother u meant but that was two > years ago > > On 14/05/07, _Belinda _ > gmail.com> wrote: > > > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > > that > > have 2 girls Yasmin and i think Renae....The other family i thinking of > is > > in Melbourne with two boys who i think are both in there late teens or > > something..... > > > > On 5/14/07, ellen howe .howe%40gmail.com> > com > > > wrote: > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > On 14/05/07, _Belinda _ > gmail.com > 40gmail.com>> > > > wrote: > > > > > > > > Hello. I do know of some people with more then one child with > charge. > > > > With > > > > one family they are pretty sure the mum (who has died) had CHARGE > > too.. > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > > parents > > > > dont have it and one has it mild and one severe > > > > > > > > On 5/14/07, looking80ab 40solcon.nl> nl > > > > > > wrote: > > > > > > > > > > Some time ago there were several massage's about adults with > charge. > > > > > > > > > > The question I have is the next : > > > > > Are there more persons that are parents of one or more children > with > > > > > charge. > > > > > I am 47 years and have two kids with charge one girl of 11 year > and > > a > > > > > boy of 7 year. > > > > > > > > > > Greetings > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Hi , Thank you for the email address. I'll try it and see what it will bring _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Baker Sent: dinsdag 15 mei 2007 3:48 To: CHARGE Subject: Re: Parent with charge Hi , I don't know of any families from Holland, but you might check with Dr. Jan van Drjk from the Netherlands. He has done a presentation on challenging behavior in CHARGE. He might be able to put you in touch with someone on your side of the world. His email address back in 2003 is listed below. I hope it is still good. j.vdijk (AT) viataal (DOT) nl Baker - Mom to Jeff (22 yr. old CHARGEr), Steve 24, happily married and expecting a little boy in July, and others married with children of their own, providing me with 6 handsome and active grandsons, and two beautiful curly haired granddaughters - one a Special Angel with Cornelia deLange Syndrome (CdLS). http://www.caringbr http://www.caringbridge.org/me/jeffbaker> idge.org/me/jeffbaker From: de Roij To: CHARGE (AT) yahoogroups (DOT) com Sent: Monday, May 14, 2007 2:26 PM Subject: RE: Parent with charge Thank you for the conformation that I am not alone . But I think that Australia is a little far away from my country. Where I am looking for is the experience of other parents in the same situation as me. _____ From: CHARGE (AT) yahoogroups (DOT) com [mailto:CHARGE (AT) yahoogroups (DOT) com] On Behalf Of ellen howe Sent: maandag 14 mei 2007 11:54 To: CHARGE (AT) yahoogroups (DOT) com Subject: Re: Parent with charge yes yasmin and rene i no the ones u mean i saw them not long ago the mothers still around was her i saw if thats the mother u meant but that was two years ago On 14/05/07, _Belinda _ gmail.com> wrote: > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > that > have 2 girls Yasmin and i think Renae....The other family i thinking of is > in Melbourne with two boys who i think are both in there late teens or > something..... > > On 5/14/07, ellen howe com > > wrote: > > > > there is more than one here ill fwd ur email to one fam i no of > > > > On 14/05/07, _Belinda _ gmail.com 40gmail.com>> > > wrote: > > > > > > Hello. I do know of some people with more then one child with charge. > > > With > > > one family they are pretty sure the mum (who has died) had CHARGE > too.. > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > parents > > > dont have it and one has it mild and one severe > > > > > > On 5/14/07, looking80ab nl > > > > wrote: > > > > > > > > Some time ago there were several massage's about adults with charge. > > > > > > > > The question I have is the next : > > > > Are there more persons that are parents of one or more children with > > > > charge. > > > > I am 47 years and have two kids with charge one girl of 11 year and > a > > > > boy of 7 year. > > > > > > > > Greetings > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Wow, 2! In reading about it though they must feel comforted as being unique and yet similar. Hm You must have tons of energy! Bonnie, Mom to a 24, Patty CHARGE 22, and wife to Re: Parent with charge > > yes yasmin and rene i no the ones u mean i saw them not long ago the > mothers > still around was her i saw if thats the mother u meant but that was two > years ago > > On 14/05/07, _Belinda _ > gmail.com> wrote: > > > > Ellen. I know theres more then one. Im thinking of the ones in sydney, > > that > > have 2 girls Yasmin and i think Renae....The other family i thinking of > is > > in Melbourne with two boys who i think are both in there late teens or > > something..... > > > > On 5/14/07, ellen howe .howe%40gmail.com> > com > > > wrote: > > > > > > there is more than one here ill fwd ur email to one fam i no of > > > > > > On 14/05/07, _Belinda _ > gmail.com > 40gmail.com>> > > > wrote: > > > > > > > > Hello. I do know of some people with more then one child with > charge. > > > > With > > > > one family they are pretty sure the mum (who has died) had CHARGE > > too.. > > > > > > > > I know theres another family in sydney with 2 kids with CHARGE. the > > > > parents > > > > dont have it and one has it mild and one severe > > > > > > > > On 5/14/07, looking80ab 40solcon.nl> nl > > > > > > wrote: > > > > > > > > > > Some time ago there were several massage's about adults with > charge. > > > > > > > > > > The question I have is the next : > > > > > Are there more persons that are parents of one or more children > with > > > > > charge. > > > > > I am 47 years and have two kids with charge one girl of 11 year > and > > a > > > > > boy of 7 year. > > > > > > > > > > Greetings > > > > > > > > > > de Roij Holland > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.