New here

December 30, 2004

Hi ...welcome to our " family " !!! I loved the poem on your

website...the " Bend in the Road " . I hope you don't mind I copied it and

printed it

out...will be the perfect addition to a page layout in my scrapbook for

Glenn...thanks for sharing!!! Stay strong....Have a Happy New Year!!!

Donelle

January 3, 2005

-

Thanks for sharing your story and your website. Your family is beautiful!

I'm also 44, also with 3 kids, living in Wisconsin. I'm here because my

step-dad has stage IV colon cancer. Believe me, my prayers and best thoughts are

with you!

Jane

In a message dated 12/31/04 1:08:35 PM, colon_cancer_support

writes:

> Subject: Re: New here

>

> Thanks all.. for the warm welcome! Here the website my husband has kept up

> on my and my status:

>

> http://www.sitelibrarian.com/teresa/.html<

> http://www.sitelibrarian.com/teresa/.html>

>

February 25, 2006

Hi there , welcome and congratulations on your new baby daughter.

It's hard to say at this point what she will have challenges with in regards

to milestones. CHARGE is extremely variable, there are so many systems affected

to different degrees, there's no " set in stone " develomental timeline for

children with CHARGE. Children who have significant challenges in one area, may

do extremely well in other areas where other children have challenges. All I

can tell you is about my own experience; we had really bad prognosis early on

(she will be totally deaf, blind & retarded was what we got early) - and now she

is in grade 2, does the regular curriculum in public school, is in her third

year of dance and goes to Brownies. Does she have challenges? Sure she does,

but she is doing amazingly well and is a happy kid. She'll never be exactly the

same as all the other kids but I wouldn't change a thing (okay, well maybe the

runny nose, but you know what I mean!)...

It's a hard time for you right now and it's going to be hard for awhile until

you adjust to this new life you've been thrust into, but it does get better and

you will settle into your " new state " of normal. The first year is the roughest

for sure I've found.

If you have time, I'd like you to visit Kennedy's web site - it might give you

a snapshot into her life so far, I remember Graeme & I sitting in the hospital

library trying to see what it " might be like " . I completely understand your

wanting some idea of what life is going to be like. Her web site is:

http://ca.geocities.com/weirfamilyrogers/kennedy.html

Keep asking lots of questions and learning, the more you know, the more

comfortable you'll be about things. I'm glad you found us so soon after the

birth of your daughter. We'd love to hear more about her by the way - what's

her name?

Hugs from Canada,

W

wrote:

I am new to this group; my daughter was born January 11 and was

diagnosed with charge syndrome. She has to have two surgeries before

she is 6 months old. I'm still learning about the syndrome but I

wanted to know some of the things to expect. What milestones will she

have problems with? Will she ever be able to live a normal life? Will

she be able to have kids of her own someday? If I were to try for

another child what would my odds be of having another child with charge

syndrome? Things are just also confusing right now and it is hard to

keep control of my emotions, but I love my baby girl with all my heart

and she is the most beautiful baby and I would do anything in the world

for her.

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

February 25, 2006

Hi there and congrats on your beautiful baby. Her birth will forever

change your life--the fact that she has CHARGE syndrome will deepen

that change. In some ways it will be a journey that deepens genuine

friendships, and richen your life. In other ways, it will be

stressful and challenging. You came to the right place for answers

and support!

First off, you should join the CHARGE Syndrome Foundation and get a

copy of the manual. The manual outlines all the possible areas that

she might be affected. Keep in mind that all CHARGE kids are

different, and you might read something that is disturbing to you, but

it doesn't mean that you will be affected by it. So, just allow it

tgo be informational and let your daughter tell you what she will and

won't have through her own development. Most likely, she will have

delays in her motor development, especially if she doesn't have semi

circular canals in her ears. You should make sure that she gets

involved in early intervention services like PT, OT, etc. These

services can dramatically improve the progress that she makes overall.

The questions that you have listed are very similar to those that I

had when my dauther, now 20 months, was diagnosed. I'd recommend that

you go to the picture link to see pics of all the kids who have photos

posted. It will leave you with a feeling of " this is going to be

okay! " . I remember wondering if Carmen would know her own name, know

me, be affectionate, etc. Well, the pics helped me calm down and

realize that while her life would be different, she would still

experience joy--and that's all that mattered to me at the time. Now,

she is a happy (so very happy) little girl, who is fiesty, sweet,

loving, etc. and although I would never have wished this on her or any

other child, I know she is going to live a long happy life. Not the

one we had hoped for, but a different one that will teach us more than

we had ever imagined.

There is a relatively low risk of having a 2nd child with CHARGE,

however it has happened. You should most likely get the genetic

testing available to you to determine if you or your husband are

carriers of the genetic cause for CHARGE.

What state do you live in? And, what symptoms of CHARGE does your

daughter have?

Take care, welcome, and be strong!

, mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

> I am new to this group; my daughter was born January 11 and was

> diagnosed with charge syndrome. She has to have two surgeries before

> she is 6 months old. I'm still learning about the syndrome but I

> wanted to know some of the things to expect. What milestones will she

> have problems with? Will she ever be able to live a normal life? Will

> she be able to have kids of her own someday? If I were to try for

> another child what would my odds be of having another child with charge

> syndrome? Things are just also confusing right now and it is hard to

> keep control of my emotions, but I love my baby girl with all my heart

> and she is the most beautiful baby and I would do anything in the world

> for her.

>

February 25, 2006

Hi

My baby Amelie was born 10th January 2005, she is 13 months old, we

are newish to this listserv, but it is my life saver, every day I

check in for a few minutes even with no time, just to keep up with

everyone, but most of all, all your questions will be answered by

one of the mums or dads on here.

good luck and welcome.

Lesley x

Mum to le 11 Olivia 10 Fleur 2 and Amelie 1 charge (UK)

>

> I am new to this group; my daughter was born January 11 and was

> diagnosed with charge syndrome. She has to have two surgeries

before

> she is 6 months old. I'm still learning about the syndrome but I

> wanted to know some of the things to expect. What milestones will

she

> have problems with? Will she ever be able to live a normal life?

Will

> she be able to have kids of her own someday? If I were to try for

> another child what would my odds be of having another child with

charge

> syndrome? Things are just also confusing right now and it is hard

to

> keep control of my emotions, but I love my baby girl with all my

heart

> and she is the most beautiful baby and I would do anything in the

world

> for her.

>

February 25, 2006

My daughter Rebekah was born January 11 and weight. She has

Tetralogy of Fallot, Coloboma, Anorectal Imperforate, a kidney that

does not work, and she failed her low tone hearing test. She will be

having heart and rectal surgery before she turns 6 months. The

rectal surgery is scheduled for April 4th and we meet with the heart

surgeon on Tuesday and will probably schedule her heart surgery

then. When we went to the pediatricians they found that she had

fluid in her ears and an ear infection so hopefully her ears will be

fine with the antibiotics. She goes in again to have her hearing

tested next month. Her eye sight doesn't sound good. They say she

is missing tissue in the retina, iris, and optic nerve. They believe

she will have some seeing but not much, they will know more when she

gets a little older and they can do more test on her. I've created

her a photo album on yahoo that you can all see what she looks like.

We live in Canal Winchester, OH (a suburb of Columbus, OH) and have

already started getting help from a program called Help Me Grow to

help her be where she needs to be with her age group. I found the

Charge website and am going to look into getting all the items they

have to offer. To bad their annual meetings are in CA, I don't think

we would be able to make it there anytime soon.

Here website is:

http://pg.photos.yahoo.com/ph/fafabearsbcglobal (DOT) net/album?.dir=/f14f &

..src=ph & .tok=phxu2dEBkBMHI49a

February 25, 2006

Hi ,

Welcome and congratulations on the birth of your daughter. Beautiful photos

and what a beautiful girl you have. I feel honoured to have had a little

peep at all your lives since Rebekah's birth.

This must be an unnerving time for you but life will get easier. This is a

great site to get lots of support, answers and to share your downs and

certainly your ups with people who truly understand. Among other things,

our daughter has the colobomas as well. We too were given the worst

scenario but now she is older, she has surprised everyone. Keep an open

mind, give her the best you can and she will gradually let you know what she

is capable of.

Sorry, rushing off to bed but just had to say welcome and thanks for sharing

the lovely photos. Very good luck with the early times procedures and the

surgeries and I look forward to hearing more about Rebekah and your family.

Best wishes from London England......

Flo (mum to - CHARGE 5 and Elly - 3)

February 26, 2006

,

Nice to meet you! Rebekah is beautiful!!

We're in Ohio, too--in Mason, just north of Cincinnati (right near Kings

Island). There are several families in Ohio with kids with CHARGE, so you will

find a nice, supportive family here. Just recently, several families got

together at the Mc House in Columbus to meet, talk, share stories,

let the kids play, etc. It was really nice! We're planning to do this again

sometime in the summer and hope that even more families can join us. We'll be

sure to include you.

Good luck with all of Rebekah's surgeries coming up. She's precious!

, mom to (4)

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

February 26, 2006

,

What a dolly! Thanks for sharing. Just to let you know the CHARGE

conferences aren't always in California; it switches all around.

I've been to ones in Houston, Indianapolis, Cleveland, and Miami.

They are wonderful!

W.

>

> My daughter Rebekah was born January 11 and weight. She has

> Tetralogy of Fallot, Coloboma, Anorectal Imperforate, a kidney

that

> does not work, and she failed her low tone hearing test. She will

be

> having heart and rectal surgery before she turns 6 months. The

> rectal surgery is scheduled for April 4th and we meet with the

heart

> surgeon on Tuesday and will probably schedule her heart surgery

> then. When we went to the pediatricians they found that she had

> fluid in her ears and an ear infection so hopefully her ears will

be

> fine with the antibiotics. She goes in again to have her hearing

> tested next month. Her eye sight doesn't sound good. They say

she

> is missing tissue in the retina, iris, and optic nerve. They

believe

> she will have some seeing but not much, they will know more when

she

> gets a little older and they can do more test on her. I've

created

> her a photo album on yahoo that you can all see what she looks

like.

> We live in Canal Winchester, OH (a suburb of Columbus, OH) and

have

> already started getting help from a program called Help Me Grow to

> help her be where she needs to be with her age group. I found the

> Charge website and am going to look into getting all the items

they

> have to offer. To bad their annual meetings are in CA, I don't

think

> we would be able to make it there anytime soon.

>

> Here website is:

> http://pg.photos.yahoo.com/ph/fafabear@.../album?.dir=/f14f &

> .src=ph & .tok=phxu2dEBkBMHI49a

>

February 28, 2006

Thank you for sharing the pictures. As I look at her pictures I see the

perfection of her. When they are first born, all we hear is about

everything that is wrong, but oh how perfectly wonderful she is.

She is your precious baby who you love and are caring for like all parents

do. Please know that as bad as all the losses sound on paper, they do

impact life, but the life our kids have is not nearly so bleak as you might

imagine now. So many losses, and much ahead, but you will make it!

Kim

> My daughter Rebekah was born January 11 and weight. She has

> Tetralogy of Fallot, Coloboma, Anorectal Imperforate, a kidney that

> does not work, and she failed her low tone hearing test. She will be

> having heart and rectal surgery before she turns 6 months. The

> rectal surgery is scheduled for April 4th and we meet with the heart

> surgeon on Tuesday and will probably schedule her heart surgery

> then. When we went to the pediatricians they found that she had

> fluid in her ears and an ear infection so hopefully her ears will be

> fine with the antibiotics. She goes in again to have her hearing

> tested next month. Her eye sight doesn't sound good. They say she

> is missing tissue in the retina, iris, and optic nerve. They believe

> she will have some seeing but not much, they will know more when she

> gets a little older and they can do more test on her. I've created

> her a photo album on yahoo that you can all see what she looks like.

> We live in Canal Winchester, OH (a suburb of Columbus, OH) and have

> already started getting help from a program called Help Me Grow to

> help her be where she needs to be with her age group. I found the

> Charge website and am going to look into getting all the items they

> have to offer. To bad their annual meetings are in CA, I don't think

> we would be able to make it there anytime soon.

>

> Here website is:

> http://pg.photos.yahoo.com/ph/fafabearsbcglobal (DOT) net/album?.dir=/f14f &

> .src=ph & .tok=phxu2dEBkBMHI49a

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

February 28, 2006