Re: It's official - has CHARGE!!!

May 15, 2006

is,

I wonder if the congratulations are in order for the diagnosis or getting a

letter from a medical professional saying you are right!!! How often does

that happen?

Can't wait to see the picture.

pam

May 15, 2006

is,

I wonder if the congratulations are in order for the diagnosis or getting a

letter from a medical professional saying you are right!!! How often does

that happen?

Can't wait to see the picture.

pam

May 15, 2006

is,

I am so glad you finally got answers!!! I know how hard it is to

wait and sometimes I dont understand when doctors dont listen. It

can drive you crazy!!

Hugs and welcome to our world!!

Crystal and Eva (13 month old CHARGEr)

>

> Some of you will know of my lengthy battle to get our geneticist

to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our

view. But

> after much pressure she finally agreed to do the gene testing, he

tested

> positive for the mutation a few months ago, and we were waiting

for the

> results to come back from Neil and I, just incase the mutation

they found

> was also present in either Neil or I (making it a natural

variation and not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to

confirm

> Charge dx ASAP so we could get on with thinking about having

another child

> (!) and got the following reply....this is not edited: she is a

woman of few

> words!

>

> " is - I recieved the result last week and have signed the

letter today

> so should be with you tomorrow. YOu were right it is CHARGE

neither of you

> carry the mutation. Do you want another appointment?. The

recurrence risk is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when

was 10

> days old...and it's only taken her another 2 yrs and 6 months to

confirm!

>

> But the good news is, this means a. I can post 's picture in

to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the

listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing

our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I

take her a

> " present " ? I was thinking of the Charge gift wrapped??!! to

aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to

wear to the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis /

limited

> knowledge of Charge and her stubborn nature (eg. she would not

even read my

> emails from Meg) could have cost us 2 years worth of learning and

sharing

> information here on the listserv and with other UK families. If I

had

> believed her and dismissed Charge then would not have had

the learning

> opportunities he has benefited from because I would have missed

out on all

> the tips and ideas I get from participating here. What a high

cost that

> would have been. Thank god I didn't listen to her and instead I

listened to

> the internal voice that said " No - she is wrong, I just feel it in

my gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall

of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so

myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about

it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

is,

I am so glad you finally got answers!!! I know how hard it is to

wait and sometimes I dont understand when doctors dont listen. It

can drive you crazy!!

Hugs and welcome to our world!!

Crystal and Eva (13 month old CHARGEr)

>

> Some of you will know of my lengthy battle to get our geneticist

to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our

view. But

> after much pressure she finally agreed to do the gene testing, he

tested

> positive for the mutation a few months ago, and we were waiting

for the

> results to come back from Neil and I, just incase the mutation

they found

> was also present in either Neil or I (making it a natural

variation and not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to

confirm

> Charge dx ASAP so we could get on with thinking about having

another child

> (!) and got the following reply....this is not edited: she is a

woman of few

> words!

>

> " is - I recieved the result last week and have signed the

letter today

> so should be with you tomorrow. YOu were right it is CHARGE

neither of you

> carry the mutation. Do you want another appointment?. The

recurrence risk is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when

was 10

> days old...and it's only taken her another 2 yrs and 6 months to

confirm!

>

> But the good news is, this means a. I can post 's picture in

to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the

listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing

our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I

take her a

> " present " ? I was thinking of the Charge gift wrapped??!! to

aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to

wear to the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis /

limited

> knowledge of Charge and her stubborn nature (eg. she would not

even read my

> emails from Meg) could have cost us 2 years worth of learning and

sharing

> information here on the listserv and with other UK families. If I

had

> believed her and dismissed Charge then would not have had

the learning

> opportunities he has benefited from because I would have missed

out on all

> the tips and ideas I get from participating here. What a high

cost that

> would have been. Thank god I didn't listen to her and instead I

listened to

> the internal voice that said " No - she is wrong, I just feel it in

my gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall

of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so

myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about

it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

is,

I am so glad you finally got answers!!! I know how hard it is to

wait and sometimes I dont understand when doctors dont listen. It

can drive you crazy!!

Hugs and welcome to our world!!

Crystal and Eva (13 month old CHARGEr)

>

> Some of you will know of my lengthy battle to get our geneticist

to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our

view. But

> after much pressure she finally agreed to do the gene testing, he

tested

> positive for the mutation a few months ago, and we were waiting

for the

> results to come back from Neil and I, just incase the mutation

they found

> was also present in either Neil or I (making it a natural

variation and not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to

confirm

> Charge dx ASAP so we could get on with thinking about having

another child

> (!) and got the following reply....this is not edited: she is a

woman of few

> words!

>

> " is - I recieved the result last week and have signed the

letter today

> so should be with you tomorrow. YOu were right it is CHARGE

neither of you

> carry the mutation. Do you want another appointment?. The

recurrence risk is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when

was 10

> days old...and it's only taken her another 2 yrs and 6 months to

confirm!

>

> But the good news is, this means a. I can post 's picture in

to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the

listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing

our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I

take her a

> " present " ? I was thinking of the Charge gift wrapped??!! to

aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to

wear to the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis /

limited

> knowledge of Charge and her stubborn nature (eg. she would not

even read my

> emails from Meg) could have cost us 2 years worth of learning and

sharing

> information here on the listserv and with other UK families. If I

had

> believed her and dismissed Charge then would not have had

the learning

> opportunities he has benefited from because I would have missed

out on all

> the tips and ideas I get from participating here. What a high

cost that

> would have been. Thank god I didn't listen to her and instead I

listened to

> the internal voice that said " No - she is wrong, I just feel it in

my gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall

of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so

myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about

it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

Hi is

At last indeed! Feel like telling her told you so? I'm glad you can now

consider that you are one of us - you know we considered you one of us

anyway.

I think you should ask Meg for the genetic advice regarding a second child

rather than discuss it with this delightful woman. Meg has fairly recently

covered this again here on the listserv.

Also take heart from all the British families you have met where there has

been no problem with a second child (I can list many others). The only

family I know of in Britain where there is two children with CHARGE the

mother also has the gene mutation (she has a few characteristics of CHARGE).

She also has a third child without CHARGE.

Flo will tell you that whatever the low risks of a second child with CHARGE

and additional scans she had during pregnancy she still worried with Elly.

Good luck and have fun

Simon

May 15, 2006

Hi is

At last indeed! Feel like telling her told you so? I'm glad you can now

consider that you are one of us - you know we considered you one of us

anyway.

I think you should ask Meg for the genetic advice regarding a second child

rather than discuss it with this delightful woman. Meg has fairly recently

covered this again here on the listserv.

Also take heart from all the British families you have met where there has

been no problem with a second child (I can list many others). The only

family I know of in Britain where there is two children with CHARGE the

mother also has the gene mutation (she has a few characteristics of CHARGE).

She also has a third child without CHARGE.

Flo will tell you that whatever the low risks of a second child with CHARGE

and additional scans she had during pregnancy she still worried with Elly.

Good luck and have fun

Simon

May 15, 2006

Hi is

At last indeed! Feel like telling her told you so? I'm glad you can now

consider that you are one of us - you know we considered you one of us

anyway.

I think you should ask Meg for the genetic advice regarding a second child

rather than discuss it with this delightful woman. Meg has fairly recently

covered this again here on the listserv.

Also take heart from all the British families you have met where there has

been no problem with a second child (I can list many others). The only

family I know of in Britain where there is two children with CHARGE the

mother also has the gene mutation (she has a few characteristics of CHARGE).

She also has a third child without CHARGE.

Flo will tell you that whatever the low risks of a second child with CHARGE

and additional scans she had during pregnancy she still worried with Elly.

Good luck and have fun

Simon

May 15, 2006

This story should be used to train other geneticists/doctors...

PS - you were never an imposter and could've ALWAYS posted his picture!!!

>

> Some of you will know of my lengthy battle to get our geneticist to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our view. But

> after much pressure she finally agreed to do the gene testing, he tested

> positive for the mutation a few months ago, and we were waiting for the

> results to come back from Neil and I, just incase the mutation they found

> was also present in either Neil or I (making it a natural variation and

> not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to confirm

> Charge dx ASAP so we could get on with thinking about having another child

> (!) and got the following reply....this is not edited: she is a woman of

> few

> words!

>

> " is - I recieved the result last week and have signed the letter today

> so should be with you tomorrow. YOu were right it is CHARGE neither of you

> carry the mutation. Do you want another appointment?. The recurrence risk

> is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when was

> 10

> days old...and it's only taken her another 2 yrs and 6 months to confirm!

>

> But the good news is, this means a. I can post 's picture in to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

> diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I take her

> a

> " present " ? I was thinking of the Charge gift wrapped??!! to aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to wear to

> the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis / limited

> knowledge of Charge and her stubborn nature (eg. she would not even read

> my

> emails from Meg) could have cost us 2 years worth of learning and sharing

> information here on the listserv and with other UK families. If I had

> believed her and dismissed Charge then would not have had the

> learning

> opportunities he has benefited from because I would have missed out on all

> the tips and ideas I get from participating here. What a high cost that

> would have been. Thank god I didn't listen to her and instead I listened

> to

> the internal voice that said " No - she is wrong, I just feel it in my

> gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

This story should be used to train other geneticists/doctors...

PS - you were never an imposter and could've ALWAYS posted his picture!!!

>

> Some of you will know of my lengthy battle to get our geneticist to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our view. But

> after much pressure she finally agreed to do the gene testing, he tested

> positive for the mutation a few months ago, and we were waiting for the

> results to come back from Neil and I, just incase the mutation they found

> was also present in either Neil or I (making it a natural variation and

> not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to confirm

> Charge dx ASAP so we could get on with thinking about having another child

> (!) and got the following reply....this is not edited: she is a woman of

> few

> words!

>

> " is - I recieved the result last week and have signed the letter today

> so should be with you tomorrow. YOu were right it is CHARGE neither of you

> carry the mutation. Do you want another appointment?. The recurrence risk

> is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when was

> 10

> days old...and it's only taken her another 2 yrs and 6 months to confirm!

>

> But the good news is, this means a. I can post 's picture in to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

> diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I take her

> a

> " present " ? I was thinking of the Charge gift wrapped??!! to aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to wear to

> the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis / limited

> knowledge of Charge and her stubborn nature (eg. she would not even read

> my

> emails from Meg) could have cost us 2 years worth of learning and sharing

> information here on the listserv and with other UK families. If I had

> believed her and dismissed Charge then would not have had the

> learning

> opportunities he has benefited from because I would have missed out on all

> the tips and ideas I get from participating here. What a high cost that

> would have been. Thank god I didn't listen to her and instead I listened

> to

> the internal voice that said " No - she is wrong, I just feel it in my

> gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

This story should be used to train other geneticists/doctors...

PS - you were never an imposter and could've ALWAYS posted his picture!!!

>

> Some of you will know of my lengthy battle to get our geneticist to accept

> that has CHARGE!

> Adament he didn't have Charge she totally dismissed it and our view. But

> after much pressure she finally agreed to do the gene testing, he tested

> positive for the mutation a few months ago, and we were waiting for the

> results to come back from Neil and I, just incase the mutation they found

> was also present in either Neil or I (making it a natural variation and

> not

> Charge).

>

> So, I had chased up the geneticist today telling her we wanted to confirm

> Charge dx ASAP so we could get on with thinking about having another child

> (!) and got the following reply....this is not edited: she is a woman of

> few

> words!

>

> " is - I recieved the result last week and have signed the letter today

> so should be with you tomorrow. YOu were right it is CHARGE neither of you

> carry the mutation. Do you want another appointment?. The recurrence risk

> is

> not zero. I am at St s this friday. "

>

> So there we are - it's official....what we knew via Google when was

> 10

> days old...and it's only taken her another 2 yrs and 6 months to confirm!

>

> But the good news is, this means a. I can post 's picture in to the

> Charge Hall of Fame!! and b. I don't feel like an imposter on the listserv

> any longer!!!

>

> Thanks to Meg Hefner for all her support in helping us get this

> diagnosis!!!

> She believed had Charge and encouraged us to keep on pushing our

> doctors. I am thrilled to have a answer and somewhere we belong!

>

> Now, if I take up the offer of an appointment on Friday should I take her

> a

> " present " ? I was thinking of the Charge gift wrapped??!! to aid her

> in future Dx's.

>

> I have also prepared by having a T Shirt printed up for to wear to

> the

> appointment, based on a suggestion I read here a while ago, it says

> " SuperCHARGEd! " .

>

> But joking aside I still feel angry that her mis-diagnosis / limited

> knowledge of Charge and her stubborn nature (eg. she would not even read

> my

> emails from Meg) could have cost us 2 years worth of learning and sharing

> information here on the listserv and with other UK families. If I had

> believed her and dismissed Charge then would not have had the

> learning

> opportunities he has benefited from because I would have missed out on all

> the tips and ideas I get from participating here. What a high cost that

> would have been. Thank god I didn't listen to her and instead I listened

> to

> the internal voice that said " No - she is wrong, I just feel it in my

> gut " .

>

> Ah, life! Look out for the new handsome chap on the Charge Hall of Fame.

> Lock up your daughters, he is a bit of a stunner if I say so myself!!!

>

> is (Mum to JACOB 2, UK, who has definitely, no doubt about it, 100%

> CHARGE SYNDROME!!!!)

>

May 15, 2006

Thanks for putting his picture up !!

Arrrhh, he looks so cute up there next to all the other Stars!!

is x

>

> This story should be used to train other geneticists/doctors...

>

> PS - you were never an imposter and could've ALWAYS posted his picture!!!

>

> >

> > Some of you will know of my lengthy battle to get our geneticist to

> accept

> > that has CHARGE!

> > Adament he didn't have Charge she totally dismissed it and our

> view. But

> > after much pressure she finally agreed to do the gene testing, he tested

> > positive for the mutation a few months ago, and we were waiting for the

> > results to come back from Neil and I, just incase the mutation they

> found

> > was also present in either Neil or I (making it a natural variation and

> > not

> > Charge).

> >

> > So, I had chased up the geneticist today telling her we wanted to

> confirm

> > Charge dx ASAP so we could get on with thinking about having another

> child

> > (!) and got the following reply....this is not edited: she is a woman of

> > few

> > words!

> >

> > " is - I recieved the result last week and have signed the letter

> today

> > so should be with you tomorrow. YOu were right it is CHARGE neither of

> you

> > carry the mutation. Do you want another appointment?. The recurrence

> risk

> > is

> > not zero. I am at St s this friday. "

> >

> > So there we are - it's official....what we knew via Google when

> was

> > 10

> > days old...and it's only taken her another 2 yrs and 6 months to

> confirm!

> >

> > But the good news is, this means a. I can post 's picture in to the

> > Charge Hall of Fame!! and b. I don't feel like an imposter on the

> listserv

> > any longer!!!

> >

> > Thanks to Meg Hefner for all her support in helping us get this

> > diagnosis!!!

> > She believed had Charge and encouraged us to keep on pushing our

> > doctors. I am thrilled to have a answer and somewhere we belong!

> >

> > Now, if I take up the offer of an appointment on Friday should I take

> her

> > a

> > " present " ? I was thinking of the Charge gift wrapped??!! to aid

> her

> > in future Dx's.

> >

> > I have also prepared by having a T Shirt printed up for to wear to

> > the

> > appointment, based on a suggestion I read here a while ago, it says

> > " SuperCHARGEd! " .

> >

> > But joking aside I still feel angry that her mis-diagnosis / limited

> > knowledge of Charge and her stubborn nature (eg. she would not even read

> > my

> > emails from Meg) could have cost us 2 years worth of learning and

> sharing

> > information here on the listserv and with other UK families. If I had

> > believed her and dismissed Charge then would not have had the

> > learning

> > opportunities he has benefited from because I would have missed out on

> all

> > the tips and ideas I get from participating here. What a high cost that

> > would have been. Thank god I didn't listen to her and instead I

> listened

> > to

> > the internal voice that said " No - she is wrong, I just feel it in my

> > gut " .

> >

> > Ah, life! Look out for the new handsome chap on the Charge Hall of

> Fame.

> > Lock up your daughters, he is a bit of a stunner if I say so myself!!!

> >

> > is (Mum to JACOB 2, UK, who has definitely, no doubt about it, 100%

> > CHARGE SYNDROME!!!!)

> >

May 15, 2006

Thanks for putting his picture up !!

Arrrhh, he looks so cute up there next to all the other Stars!!

is x

>

> This story should be used to train other geneticists/doctors...

>

> PS - you were never an imposter and could've ALWAYS posted his picture!!!

>

> >

> > Some of you will know of my lengthy battle to get our geneticist to

> accept

> > that has CHARGE!

> > Adament he didn't have Charge she totally dismissed it and our

> view. But

> > after much pressure she finally agreed to do the gene testing, he tested

> > positive for the mutation a few months ago, and we were waiting for the

> > results to come back from Neil and I, just incase the mutation they

> found

> > was also present in either Neil or I (making it a natural variation and

> > not

> > Charge).

> >

> > So, I had chased up the geneticist today telling her we wanted to

> confirm

> > Charge dx ASAP so we could get on with thinking about having another

> child

> > (!) and got the following reply....this is not edited: she is a woman of

> > few

> > words!

> >

> > " is - I recieved the result last week and have signed the letter

> today

> > so should be with you tomorrow. YOu were right it is CHARGE neither of

> you

> > carry the mutation. Do you want another appointment?. The recurrence

> risk

> > is

> > not zero. I am at St s this friday. "

> >

> > So there we are - it's official....what we knew via Google when

> was

> > 10

> > days old...and it's only taken her another 2 yrs and 6 months to

> confirm!

> >

> > But the good news is, this means a. I can post 's picture in to the

> > Charge Hall of Fame!! and b. I don't feel like an imposter on the

> listserv

> > any longer!!!

> >

> > Thanks to Meg Hefner for all her support in helping us get this

> > diagnosis!!!

> > She believed had Charge and encouraged us to keep on pushing our

> > doctors. I am thrilled to have a answer and somewhere we belong!

> >

> > Now, if I take up the offer of an appointment on Friday should I take

> her

> > a

> > " present " ? I was thinking of the Charge gift wrapped??!! to aid

> her

> > in future Dx's.

> >

> > I have also prepared by having a T Shirt printed up for to wear to

> > the

> > appointment, based on a suggestion I read here a while ago, it says

> > " SuperCHARGEd! " .

> >

> > But joking aside I still feel angry that her mis-diagnosis / limited

> > knowledge of Charge and her stubborn nature (eg. she would not even read

> > my

> > emails from Meg) could have cost us 2 years worth of learning and

> sharing

> > information here on the listserv and with other UK families. If I had

> > believed her and dismissed Charge then would not have had the

> > learning

> > opportunities he has benefited from because I would have missed out on

> all

> > the tips and ideas I get from participating here. What a high cost that

> > would have been. Thank god I didn't listen to her and instead I

> listened

> > to

> > the internal voice that said " No - she is wrong, I just feel it in my

> > gut " .

> >

> > Ah, life! Look out for the new handsome chap on the Charge Hall of

> Fame.

> > Lock up your daughters, he is a bit of a stunner if I say so myself!!!

> >

> > is (Mum to JACOB 2, UK, who has definitely, no doubt about it, 100%

> > CHARGE SYNDROME!!!!)

> >

May 15, 2006

is,

Wow. Glad you kept going on it and I hope that doctor feels like a bunch of

junk. They'd never admit it though. Yea for you. I was joking with some

other mothers about T-shirts and think mothers should have one too. Very

often we are called Bit--es because we don't back down. So we think the shirt

should say I'm a " B " in CHARGE Mother!

I do have to say that I'm sad people listen to such doctors. There are many

children who do not test positive for the gene and yet totally absolutely

have CHARGE. Just because they don't test for the gene they think they can't

have it when in fact it's not true. The child really does have CHARGE. My

daughter is one of those. We all have to remember that they are just in the

beginning of understanding of all this. Genetics is just way too complicated. I

say-everyone should listen to Meg. That's it-doctors included. Thank

goodness she was able to sick with you. It makes me shiver to think of what

would

have, or not have, happened if she weren't there for you. How lucky are all

of us to have someone like her.

Now I have a question for you, are you changing doctors?!

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

May 15, 2006