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Re: Muliple CHARGE Children

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,

The information you got is based on statistics. I think we ALL feel the same

about statistics since WE ARE STATISTICs. But as a mom 0f 2 CHARGErs here's

my not so professional opinion.

The fact that your CHARGEr came from a different man gives you GREAT odds of

NOT haveing another. Just from the info and data I have come up with in my

" personal research " and experience from talking to others, I feel you are

good to go.

My son, , who died with CHARGE was in a pediatric nursing home where a

little girl with CHARGE had been all her life. She was 2 1/2 when we got

there. The day went in, she was discharged from being adopted. She was

her parents 3 rd child with CHARGE Syndrome. Every child those parents had

ended up with CHARGE.... The stress broke up the marriage and the mother

went on to have healthy children with a new husband.

That story should make you feel a little better.

I had my tubes tied for fear of another CHARGEr a few months ago, but to be

honest, if I thought my husband would allow me to carry another man's child

and still look at the child as his own, I would have asked, because that's

how much faith I have that a different man and I would not have a CHARGEr,

but hey let's face, I love my husband and we have a wonderful marriage, so

he doesn't want more children because of CHARGE so i guess my dream of 3

(living) children has to be a marital compromise.( BTW,,,,so nobody gets the

wrong idea, I meant invitro, not an one night thing.LOL ;-) )

I hope this makes you feel better. But honestly until they find the " gene "

causinf CHARGE, we will never be 100% sure.

GOOD LUCK!!!!!!

Foley

Mom to 4 1/2, (My CHARGE guy in heaven) and Jillian 2w/cHaRGE

wife to Jeff in Virginia

Muliple CHARGE Children

> Hi Everyone!

> My husband and I were considering having another child. I have two

children

> from a previous marriage, one of which is a CHARGEr. He is 4 years old

and

> his name is Landon. My oldest son, is 9 years old. In

everything

> that I have read and have been told about CHARGE, the chances of me having

> another child with CHARGE is less than 3%. But I have noticed that

several

> of you have more than one child with CHARGE. Have I been misinformed? I

> was also curious to know if there is a gene test for CHARGE, yet? Is it

> also true that it is believed to be passed on from the mother? The

> geneticist who diagnosed Landon with CHARGE has since moved away and we

are

> not currently seeing another one. I have always been told that Landon has

a

> very mild form of it. He does not have any hearing or vision loss, heart

> problems or artresia(?) problems. However he is still not talking and can

> only walk with assistance. I just know how I panic over every little

thing

> with Landon. I am scared to have another child because I am a worrier.

> Also, can anyone tell me if seizures are associated with CHARGE? Landon

has

> had the Febrile Seizures (seizures associated with fever) for about the

last

> 18 months. This past Tuesday, however, he had one with no fever. Is this

> common? He is on seizure medication (Carbatrol). His neurologist told me

> not to worry (yea, right) and just watch him. If he has more seizures

they

> will increase his medication. He has had MRI's, CAT scans and EEG's in

the

> past but nothing has every showed up. Could they be missing something?

>

> Any help you guys could offer would be greatly appreciated!

>

> Thanks,

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

> ------------------------------------------------------------------------

> Remember four years of good friends, bad clothes, explosive chemistry

> experiments.

> http://click./1/4051/2/_/22564/_/958067599/

> ------------------------------------------------------------------------

>

> For information about the CHARGE Syndrome

> Foundation or to become a member please

> contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

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