New Here

[Guest guest]

Hi ,

Yes, I was dx with Pseudotumor cerebrai and Hydrocephalus which resulted in

2 VP shunts and 1 LP. Life hasn't been too easy but thank God for today's

treatments. Happy to be alive!

My problems started in 94 (I was 35) and that's when I got 2 of my shunts.

I can tell you, that I used to pride myself in an excellent memory which I

used to have. I noticed that my memory got worse after my hydrocephalus

episodes. Also, sometimes, I don't grasp the meaning of what is being said

right away. It takes my brain a couple of 'go-rounds' to catch on. My

attention span is horrible too. Oh well, what can you do?

I'm now on permanent disability and learning to adjust everyday. I left

behind a great career in the computer industry in the year 2000, which I had

been involved in for over 20 years. It was so scary for me to leave my

financial security behind but not much of a choice on the matter. I still

have a lot of symptoms and my doc's are quite sure that my Chiari and hydro

and the Pseudotumor, are not related. I'm now spending some time in UCLA

trying to get some help from the doc's there.

Please let me know if I can answer any questions you may have. I'm not an

expert, but just someone who will understand you and perhaps share inputs

with.

, I feel very bad for you and I know what's it's like. I started

suffering with major headaches from my mid 20's until things got out of

control at 35. It's a downer, that's for sure. Be strong and let me know

if I can ever be there for you.

Leanda

new here

> Hi all~

> I am new to this group and am very excited to get to know you all. A

little

> about myself...

> I was diagnosed with an adult form of hydrocephalus 3 years ago. After

what

> feels like a trillion spinal taps I finally had a VP shunt put in. During

> this whole ordeal I was diagnosed with Chiari. It seems as though since I

> had my shunt placed a year ago my chiari symptoms have gotten

progressively

> worse. I literally fall over all the time and have massive neck/headaches

to

> mention just a few. I am a 23 year old college student and my attention

span

> and reading ability has drastically declined making life very difficult, I

> was wondering if this has happened to anyone else?

> Looking forward to knowing you,

>

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi ,

Yes, I was dx with Pseudotumor cerebrai and Hydrocephalus which resulted in

2 VP shunts and 1 LP. Life hasn't been too easy but thank God for today's

treatments. Happy to be alive!

My problems started in 94 (I was 35) and that's when I got 2 of my shunts.

I can tell you, that I used to pride myself in an excellent memory which I

used to have. I noticed that my memory got worse after my hydrocephalus

episodes. Also, sometimes, I don't grasp the meaning of what is being said

right away. It takes my brain a couple of 'go-rounds' to catch on. My

attention span is horrible too. Oh well, what can you do?

I'm now on permanent disability and learning to adjust everyday. I left

behind a great career in the computer industry in the year 2000, which I had

been involved in for over 20 years. It was so scary for me to leave my

financial security behind but not much of a choice on the matter. I still

have a lot of symptoms and my doc's are quite sure that my Chiari and hydro

and the Pseudotumor, are not related. I'm now spending some time in UCLA

trying to get some help from the doc's there.

Please let me know if I can answer any questions you may have. I'm not an

expert, but just someone who will understand you and perhaps share inputs

with.

, I feel very bad for you and I know what's it's like. I started

suffering with major headaches from my mid 20's until things got out of

control at 35. It's a downer, that's for sure. Be strong and let me know

if I can ever be there for you.

Leanda

new here

> Hi all~

> I am new to this group and am very excited to get to know you all. A

little

> about myself...

> I was diagnosed with an adult form of hydrocephalus 3 years ago. After

what

> feels like a trillion spinal taps I finally had a VP shunt put in. During

> this whole ordeal I was diagnosed with Chiari. It seems as though since I

> had my shunt placed a year ago my chiari symptoms have gotten

progressively

> worse. I literally fall over all the time and have massive neck/headaches

to

> mention just a few. I am a 23 year old college student and my attention

span

> and reading ability has drastically declined making life very difficult, I

> was wondering if this has happened to anyone else?

> Looking forward to knowing you,

>

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi ,

Yes, I was dx with Pseudotumor cerebrai and Hydrocephalus which resulted in

2 VP shunts and 1 LP. Life hasn't been too easy but thank God for today's

treatments. Happy to be alive!

My problems started in 94 (I was 35) and that's when I got 2 of my shunts.

I can tell you, that I used to pride myself in an excellent memory which I

used to have. I noticed that my memory got worse after my hydrocephalus

episodes. Also, sometimes, I don't grasp the meaning of what is being said

right away. It takes my brain a couple of 'go-rounds' to catch on. My

attention span is horrible too. Oh well, what can you do?

I'm now on permanent disability and learning to adjust everyday. I left

behind a great career in the computer industry in the year 2000, which I had

been involved in for over 20 years. It was so scary for me to leave my

financial security behind but not much of a choice on the matter. I still

have a lot of symptoms and my doc's are quite sure that my Chiari and hydro

and the Pseudotumor, are not related. I'm now spending some time in UCLA

trying to get some help from the doc's there.

Please let me know if I can answer any questions you may have. I'm not an

expert, but just someone who will understand you and perhaps share inputs

with.

, I feel very bad for you and I know what's it's like. I started

suffering with major headaches from my mid 20's until things got out of

control at 35. It's a downer, that's for sure. Be strong and let me know

if I can ever be there for you.

Leanda

new here

> Hi all~

> I am new to this group and am very excited to get to know you all. A

little

> about myself...

> I was diagnosed with an adult form of hydrocephalus 3 years ago. After

what

> feels like a trillion spinal taps I finally had a VP shunt put in. During

> this whole ordeal I was diagnosed with Chiari. It seems as though since I

> had my shunt placed a year ago my chiari symptoms have gotten

progressively

> worse. I literally fall over all the time and have massive neck/headaches

to

> mention just a few. I am a 23 year old college student and my attention

span

> and reading ability has drastically declined making life very difficult, I

> was wondering if this has happened to anyone else?

> Looking forward to knowing you,

>

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

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.

[Guest guest]

-

I have to run off this morning, but I wanted to assure you that this

difficult time will get better. I remember feeling like there was no light

at the end of the tunnel and I would never have a life again -- things would

never be " ok " . But, guess what?? Amazingly, it does get " ok " . In fact, it

can be better than just ok.

I eventually realized that there was always light at the end of the tunnel.

It was just such a curving, crazy tunnel that I couldn't see the light! So

have faith that you will get to the other side. No one can tell you how or

when, but we can tell you that we all survived. This group has been such a

blessing for me. It's given me support and hope, answers to questions --

medical, educational, therapeutic, etc. In all areas of our lives, when I

have an issue, someone here has been there, done that and can lift me up.

Sometimes they even provide the questions I didn't know to ask. I hope

you'll stay around and join our CHARGE family. We all learn so much from

each other. No one else can really understand what you are dealing with.

Well-meaning friends and family just can't " get it " like other parents do.

And -- we have adults with CHARGE with us! What a gift to have a glimpse

into our children's future!

When people here (and others) told me that their child with disabilities was

a blessing, blah, blah, blah... I was sure they were fooling themselves and

trying to fool me. But it wasn't long before I understood clearly all the

blessings brought to our lives through our CHARGE family and experiences. I

would give anything for Aubrie not to have the struggles that come from

CHARGE, but I would never want to give up who she is and who I and my family

have become because of it.

Aubrie was very sick as a newborn. She was hospitalized for about 3 weeks,

home for a week, then in again for 2. Short really as far as CHARGE goes.

She had heart surgery (aorta repair) at 8 days old. Lots of therapies and

ear and eye surgeries in the first years. Still lots of therapies and

medical stuff -- but they are different now. Good news is that she is in a

regular 2nd grade classroom with a 1:1 aide. She has friends, gets invited

to parties, takes karate and horseback riding lessons, and more. She eats,

sees, hears, sings, talks, laughs, plays, reads, dances... Later, I can send

you photos of newborn hospitalization and now.

Tell us more about your daughter and the challenges she is facing. We can

tell you more about what to expect. Every child is different, but maybe you

will find someone here whose child is similar enough to give you a bit of a

glimpse into your future. Although the doctors will give you the worst case

scenario, hold onto hope because your daughter is likely to exceed your

wildest expectations.

Welcome! I know you would never have booked a trip to CHARGEland. But

hopefully you will find that it's not such a bad place to be. And even if

all the stops on the tour are not exactly wonderful, the people around you

make it better.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

New Here

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-.

[Guest guest]

welcome to the workld we call charge land im a 20 year old charger ive got

colibomas cleft lip and ears problems ive also got tummy probs to as for

another baby with chrge theres a new gene testing in holland and there are

points in america to im in aus to so dont know them all but we are allways

here to help hugs ellen xxxx

>

> 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)

>

>

>

[Guest guest]

,

Rebekah is adorable--and the hair--oh my! You are on the right track

for sure. You are near good physicians, so just take it one day at a

time, use all your resources and love your baby! That's the best you

can do. She sure is in good hands!

Best of luck! , mom to Zachary 4.5 years and Carmen 20 months

(CHARGE)

>

> 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

>

[Guest guest]

-

Great to meet you, welcome to the list. We are also from OHIO,

Zanesville in fact only about an hour away from you. There is a new

family from Zanesville that have a baby at Children's Hospital right

now. That makes three families with children with CHARGE right here

in our little town.

My daughter is 5, she has a hearing impairment, low vision, balance

issues, swallowing problems, cleft lip and palate, NISSEN for

reflux, heart defect. She has had multiple surgeries so I know how

hard that is, we are actually going on for another one this Tuesday.

She is doing great and is currently attending a hearing impaired

preschool all day, 5 days a week. I never would have believed that

five years ago. THese kids are amazing and a true miracles that

have touch our lives.

Great to have you, email me privately anytime if you have questions

or want to talk (phone or in person).

, mom to Makenna 5

-- In CHARGE , " " wrote:

>

> ,

> 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

> >

>

[Guest guest]

-

Great to meet you, welcome to the list. We are also from OHIO,

Zanesville in fact only about an hour away from you. There is a new

family from Zanesville that have a baby at Children's Hospital right

now. That makes three families with children with CHARGE right here

in our little town.

My daughter is 5, she has a hearing impairment, low vision, balance

issues, swallowing problems, cleft lip and palate, NISSEN for

reflux, heart defect. She has had multiple surgeries so I know how

hard that is, we are actually going on for another one this Tuesday.

She is doing great and is currently attending a hearing impaired

preschool all day, 5 days a week. I never would have believed that

five years ago. THese kids are amazing and a true miracles that

have touch our lives.

Great to have you, email me privately anytime if you have questions

or want to talk (phone or in person).

, mom to Makenna 5

-- In CHARGE , " " wrote:

>

> ,

> 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

> >

>

[Guest guest]

-

Great to meet you, welcome to the list. We are also from OHIO,

Zanesville in fact only about an hour away from you. There is a new

family from Zanesville that have a baby at Children's Hospital right

now. That makes three families with children with CHARGE right here

in our little town.

My daughter is 5, she has a hearing impairment, low vision, balance

issues, swallowing problems, cleft lip and palate, NISSEN for

reflux, heart defect. She has had multiple surgeries so I know how

hard that is, we are actually going on for another one this Tuesday.

She is doing great and is currently attending a hearing impaired

preschool all day, 5 days a week. I never would have believed that

five years ago. THese kids are amazing and a true miracles that

have touch our lives.

Great to have you, email me privately anytime if you have questions

or want to talk (phone or in person).

, mom to Makenna 5

-- In CHARGE , " " wrote:

>

> ,

> 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

> >

>

[Guest guest]

Wow, , there's another family from Zanesville now? What's up with Ohio and

CHARGE?! We have five families now within a 30-mile radius of us with CHARGE,

too. Ohio sure seems to have their share of CHARGErs, especially recently.

Maybe we were just the lucky state chosen to be blessed with so many of these

wonderful kids! :-)

Good luck with Makenna's surgery tomorrow. We'll be thinking about her, you,

and Jay. Will you be there overnight?

, mom to (4)

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Wow, , there's another family from Zanesville now? What's up with Ohio and

CHARGE?! We have five families now within a 30-mile radius of us with CHARGE,

too. Ohio sure seems to have their share of CHARGErs, especially recently.

Maybe we were just the lucky state chosen to be blessed with so many of these

wonderful kids! :-)

Good luck with Makenna's surgery tomorrow. We'll be thinking about her, you,

and Jay. Will you be there overnight?

, mom to (4)

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Wow, , there's another family from Zanesville now? What's up with Ohio and

CHARGE?! We have five families now within a 30-mile radius of us with CHARGE,

too. Ohio sure seems to have their share of CHARGErs, especially recently.

Maybe we were just the lucky state chosen to be blessed with so many of these

wonderful kids! :-)

Good luck with Makenna's surgery tomorrow. We'll be thinking about her, you,

and Jay. Will you be there overnight?

, mom to (4)

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

I got hooked up with this list when I lived in Cincinnati and worked

with a child with CHARGE. I don't think his family is on the list,

but they may be lurkers--so there might be more in the Cinci area

than you thought! I think I remember a baby being born about 5

years ago and I think they were from Chillicothe--I rememeber him

being at Columbus Childrens. Don't know what happened with him

though, since I left the list for a while.

I lived and worked in Columbus for 2 years. I miss it a lot,

especially in the fall (Go Bucks!). Guess its time to go back for

another visit (my mother in law is in Newark, OH).

Kate (PT to a CHARGEr, now in NY)

>

> Wow, , there's another family from Zanesville now? What's up

with Ohio and CHARGE?! We have five families now within a 30-mile

radius of us with CHARGE, too. Ohio sure seems to have their share

of CHARGErs, especially recently. Maybe we were just the lucky

state chosen to be blessed with so many of these wonderful kids! :-)

>

> Good luck with Makenna's surgery tomorrow. We'll be thinking

about her, you, and Jay. Will you be there overnight?

>

> , mom to (4)

>

>

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

> Yahoo! Mail

> Use Photomail to share photos without annoying attachments.

>

>

[Guest guest]

Those birth statistics certainly seem to beat the 1 in 2000-10,000 that I

was told back when.

Makes one wonder, doesn't it? Especially if the apparent increase of CHARGE

births is showing in just one or two geographic areas. Perhaps we'll get to

learn more eventually.

in Ma.

Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12

years now)

[Guest guest]

Yes, I'm sure there are more families here in Cinci that we don't even know

about. Our ENT told us that something like 9 kids had been diagnosed with

CHARGE just in the last 6 months here. Not sure if they were all from this area

or not, though. Still, those numbers sound really high to me--kind of scary.

I think we probably met the little boy in Chillicothe that you're talking

about. Last month, several CHARGE families in Ohio got together at the

Mc House in Columbus, and there was a family there from Chillicothe with a

little boy who was probably about 5 or 6. It was really nice to get to meet so

many families. We're hoping to get together again in the summer and add more

people. It's so nice to connect with others and share stories, suggestions,

etc.

, mom to (4)

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[Guest guest]

-

What a beautiful peanut!!! And you can certainly see the love that

surrounds her from all family and friends in your life. Rebekah is gonna be

absolutely *fine* with all that love and support!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

-

What a beautiful peanut!!! And you can certainly see the love that

surrounds her from all family and friends in your life. Rebekah is gonna be

absolutely *fine* with all that love and support!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

-

What a beautiful peanut!!! And you can certainly see the love that

surrounds her from all family and friends in your life. Rebekah is gonna be

absolutely *fine* with all that love and support!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ