Re: (unknown)

[Guest guest]

i should be in bed ten thirty pm here but i also wanted to tell u that if

you can get ur firencd on here to itd be cool for her to xxxxxxxxxxxxxx

>

> lol means laugh out loud if u dont know LOL and also i forgot to say they

> didnt expect me to live to three ande now look at me 20 and fighting ftr as

> theyd say and there r loads of chargers in here as we call ourselves

> battling it to we are all together with you in spirit sending godo prayers

> and thoughts ur way ellen

>

>

> >

> > you must be a devoted friend and that is soemthign you can give her

> > friendship and family support is beautiful in times like what your having

> > sounds like a definate charger think there might be one toher in suth africa

> > lisa you knwo more bout this list whos on it correct me please are they

> > still on think they were form johanasburg or soemwhere like that if they are

> > still here and readign maybe they could give a comment on here and you could

> > meet up its good to meet up with others have you or ur friendd got the

> > manual from charge jsut go to www.chargesyndrome.org it has a orderign

> > thing there and tis great for parents and professionals it si the charge

> > parents bilbe hugs and kisses to you both ellen in australia ps one of my

> > friends is from sotuh africa jsut thought ud be intterested to knwo that lol

> >

> >

> >

> > >

> > > Good day,

> > > I am new in this group and I am from South Africa.

> > > My best friend,you can call her my sister had a beautifull baby girl

> > > on the 4th of January.

> > > Minutes after she was born they discovered she had a breathing

> > > problem,only to find out she had obstruction in the nose and needed

> > > an operation,my friend was devastated,how could something so right

> > > turn into something so wrong?

> > > 3 weeks later Cherise was still not doing well,she had infection on

> > > her lungs,only to find out after the third operation she had

> > > incomplete tissue development between the stomach and the

> > > lungs,whereafter she got a trache and a tube to the stomach,it is so

> > > painfull to see this,she looks so healthy from the outside,then the

> > > doctors realised she could have CHARGE.In South Africa the doctors

> > > dont know much about this,as this was our first time as well,weve

> > > heard of anything like this.Her eyes was tested and there is no

> > > problems.

> > > Every time my friend went to see Cherise something else was

> > > wrong:there also seemed to have been a problem with the heart:the

> > > one artery did not close properly,but the doctors at this stage

> > > thinks it is minor.Yesterday the reconed she has a growth problem as

> > > her weight is tghe same as a new born.It is like these doctors in

> > > South Africa gave up hope on this precious little gift from God.I

> > > took CHARGE and started searching the web,there is not much,but

> > > luckily I found this site and is so pleased that we are not alone.All

> > > my friend wants at this stage is for her baby to get better so she

> > > can take her home and nurse her there.

> > > Can somebody please give us advice and information we are desperate.

> > > Thank you kindly.

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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 - for CHARGE Syndrome

> > > Canada information and membership, please visit

> > > http://www.chargesyndrome.ca or email info@... .

> > > 8th International

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

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

> > >

[Guest guest]

Definitely order the CHARGE manual from the CHARGE Foundation - they have

the most recent information available to parents. wwww.chargesyndrome.org

Welcome to the list.

The early days are like a roller coaster. Because every organ system can be

impacted by CHARGE, one never knows what one will find next. If they ever

need to do a CT scan or an MRI they should do the temporal lobe as well,

looking at the structures in the middle and the inner ear - very

characteristic for CHARGE.

Best of luck to you all and we look forward to the days when we get to hear

about all her marvelous development - the time will come!

Kim

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Definitely order the CHARGE manual from the CHARGE Foundation - they have

the most recent information available to parents. wwww.chargesyndrome.org

Welcome to the list.

The early days are like a roller coaster. Because every organ system can be

impacted by CHARGE, one never knows what one will find next. If they ever

need to do a CT scan or an MRI they should do the temporal lobe as well,

looking at the structures in the middle and the inner ear - very

characteristic for CHARGE.

Best of luck to you all and we look forward to the days when we get to hear

about all her marvelous development - the time will come!

Kim

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Definitely order the CHARGE manual from the CHARGE Foundation - they have

the most recent information available to parents. wwww.chargesyndrome.org

Welcome to the list.

The early days are like a roller coaster. Because every organ system can be

impacted by CHARGE, one never knows what one will find next. If they ever

need to do a CT scan or an MRI they should do the temporal lobe as well,

looking at the structures in the middle and the inner ear - very

characteristic for CHARGE.

Best of luck to you all and we look forward to the days when we get to hear

about all her marvelous development - the time will come!

Kim

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Welcome!

Ellen's suggestion to get the CHARGE manual is important. The manual is a

3-ring binder with sections on each medical and sensory area: hearing,

vision, orthopedic, etc. Each section has a portion for the physician in

medical terms that is intended for you to copy and share with them and a

section for parents written in " real language " . It will be a good start for

you to educate yourselves and the doctors about CHARGE. Then the list and

the links to professionals through the CHARGE Foundation can be key.

Joining the Foundation is separate from joining this list. There are many

professionals around the world who are dedicated to understanding our kids

and providing the medical treatments and educational interventions they need

to become independent adults. The professionals are accessible to us when

we need them so it's a terrific resource to be connected to the Foundation.

For now, know that Cherise's medical state now does not predict what her

future will be like. Most children with CHARGE begin as very medically

fragile infants. Many required tube feedings, some require tracheotomies,

most become quite developmentally delayed because their tiny bodies are so

busy surviving that there is little time for learning. But when the first

medically challenging years are past, the children can make great strides.

You didn't mention Cherise's hearing. It's important to know her hearing

and vision status as soon as possible so that you can begin communicating in

a way that will work for her. My daughter has minimal vision in one eye,

decent vision in the other, minimal hearing in one ear, and decent hearing

in the other. We didn't know the specifics of her hearing loss enough to

fit her with hearing aides til age 3 years. We used sign language and

spoken word with her from infancy. By age 2, she had about 10 spoken words

and 75 signs. Those signs were critical for me to understand her needs and

wants and to know what she comprehended about her world. Now she is totally

verbal even though her speech is difficult for strangers to understand.

You said her eyes were checked. Be sure that was done under anesthesia by a

qualified pediatric ophthalmologist who knows how to detect coloboma.

So... enough to lay on you for now. As Ellen said, just being such a

supportive and active friend is one of the best gifts you can give Cherise

and her family right now.

Michele W

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

(unknown)

Good day,

I am new in this group and I am from South Africa.

My best friend,you can call her my sister had a beautifull baby girl

on the 4th of January.

Minutes after she was born they discovered she had a breathing

problem,only to find out she had obstruction in the nose and needed

an operation,my friend was devastated,how could something so right

turn into something so wrong?

3 weeks later Cherise was still not doing well,she had infection on

her lungs,only to find out after the third operation she had

incomplete tissue development between the stomach and the

lungs,whereafter she got a trache and a tube to the stomach,it is so

painfull to see this,she looks so healthy from the outside,then the

doctors realised she could have CHARGE.In South Africa the doctors

dont know much about this,as this was our first time as well,weve

heard of anything like this.Her eyes was tested and there is no

problems.

Every time my friend went to see Cherise something else was

wrong:there also seemed to have been a problem with the heart:the

one artery did not close properly,but the doctors at this stage

thinks it is minor.Yesterday the reconed she has a growth problem as

her weight is tghe same as a new born.It is like these doctors in

South Africa gave up hope on this precious little gift from God.I

took CHARGE and started searching the web,there is not much,but

luckily I found this site and is so pleased that we are not alone.All

my friend wants at this stage is for her baby to get better so she

can take her home and nurse her there.

Can somebody please give us advice and information we are desperate.

Thank you kindly.

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Welcome!

Ellen's suggestion to get the CHARGE manual is important. The manual is a

3-ring binder with sections on each medical and sensory area: hearing,

vision, orthopedic, etc. Each section has a portion for the physician in

medical terms that is intended for you to copy and share with them and a

section for parents written in " real language " . It will be a good start for

you to educate yourselves and the doctors about CHARGE. Then the list and

the links to professionals through the CHARGE Foundation can be key.

Joining the Foundation is separate from joining this list. There are many

professionals around the world who are dedicated to understanding our kids

and providing the medical treatments and educational interventions they need

to become independent adults. The professionals are accessible to us when

we need them so it's a terrific resource to be connected to the Foundation.

For now, know that Cherise's medical state now does not predict what her

future will be like. Most children with CHARGE begin as very medically

fragile infants. Many required tube feedings, some require tracheotomies,

most become quite developmentally delayed because their tiny bodies are so

busy surviving that there is little time for learning. But when the first

medically challenging years are past, the children can make great strides.

You didn't mention Cherise's hearing. It's important to know her hearing

and vision status as soon as possible so that you can begin communicating in

a way that will work for her. My daughter has minimal vision in one eye,

decent vision in the other, minimal hearing in one ear, and decent hearing

in the other. We didn't know the specifics of her hearing loss enough to

fit her with hearing aides til age 3 years. We used sign language and

spoken word with her from infancy. By age 2, she had about 10 spoken words

and 75 signs. Those signs were critical for me to understand her needs and

wants and to know what she comprehended about her world. Now she is totally

verbal even though her speech is difficult for strangers to understand.

You said her eyes were checked. Be sure that was done under anesthesia by a

qualified pediatric ophthalmologist who knows how to detect coloboma.

So... enough to lay on you for now. As Ellen said, just being such a

supportive and active friend is one of the best gifts you can give Cherise

and her family right now.

Michele W

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

(unknown)

Good day,

I am new in this group and I am from South Africa.

My best friend,you can call her my sister had a beautifull baby girl

on the 4th of January.

Minutes after she was born they discovered she had a breathing

problem,only to find out she had obstruction in the nose and needed

an operation,my friend was devastated,how could something so right

turn into something so wrong?

3 weeks later Cherise was still not doing well,she had infection on

her lungs,only to find out after the third operation she had

incomplete tissue development between the stomach and the

lungs,whereafter she got a trache and a tube to the stomach,it is so

painfull to see this,she looks so healthy from the outside,then the

doctors realised she could have CHARGE.In South Africa the doctors

dont know much about this,as this was our first time as well,weve

heard of anything like this.Her eyes was tested and there is no

problems.

Every time my friend went to see Cherise something else was

wrong:there also seemed to have been a problem with the heart:the

one artery did not close properly,but the doctors at this stage

thinks it is minor.Yesterday the reconed she has a growth problem as

her weight is tghe same as a new born.It is like these doctors in

South Africa gave up hope on this precious little gift from God.I

took CHARGE and started searching the web,there is not much,but

luckily I found this site and is so pleased that we are not alone.All

my friend wants at this stage is for her baby to get better so she

can take her home and nurse her there.

Can somebody please give us advice and information we are desperate.

Thank you kindly.

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Dear Bonnie,

welcome to our lovely group. Where are you in SA?

I work at the Perkins School for the Blind in Massachusetts, USA and as it

happens one of our Early Intervention specialists is leaving for Cape Town

tomorrow to be involved in setting up an early intervention program for

deafblind babies and children. I don't know his schedule, but if you and your

sister are close to Cape Town, perhaps he can meet with you or at least get you

connected to people in your area.

If you can get back to me today (on or off list) I can pass on your information

to him to take with him.

pam

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Perkins School for the Blind, Deafblind Program

175 North Beacon St.

Watertown, MA 02472

> ----------

> From: CHARGE on behalf of bonnicoetzer

> Reply To: CHARGE

> Sent: Friday, February 17, 2006 6:01 AM

> To: CHARGE

> Subject: (unknown)

>

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Dear Bonnie,

welcome to our lovely group. Where are you in SA?

I work at the Perkins School for the Blind in Massachusetts, USA and as it

happens one of our Early Intervention specialists is leaving for Cape Town

tomorrow to be involved in setting up an early intervention program for

deafblind babies and children. I don't know his schedule, but if you and your

sister are close to Cape Town, perhaps he can meet with you or at least get you

connected to people in your area.

If you can get back to me today (on or off list) I can pass on your information

to him to take with him.

pam

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Perkins School for the Blind, Deafblind Program

175 North Beacon St.

Watertown, MA 02472

> ----------

> From: CHARGE on behalf of bonnicoetzer

> Reply To: CHARGE

> Sent: Friday, February 17, 2006 6:01 AM

> To: CHARGE

> Subject: (unknown)

>

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Now that would be a divine connection! To reach out from Cape Town and to

have Steve (or whoever) going to Cape Town would be phenomenal! I hope

Bonnie is close to there. Kim

On 2/17/06 8:04 AM, " pamela.ryan@... "

wrote:

> Dear Bonnie,

> welcome to our lovely group. Where are you in SA?

> I work at the Perkins School for the Blind in Massachusetts, USA and as it

> happens one of our Early Intervention specialists is leaving for Cape Town

> tomorrow to be involved in setting up an early intervention program for

> deafblind babies and children. I don't know his schedule, but if you and

> your sister are close to Cape Town, perhaps he can meet with you or at least

> get you connected to people in your area.

>

> If you can get back to me today (on or off list) I can pass on your

> information to him to take with him.

>

> pam

>

>

> Pamela J. , M.A., CAGS

> Licensed Educational Psychologist

> Perkins School for the Blind, Deafblind Program

> 175 North Beacon St.

> Watertown, MA 02472

>

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

>> From: CHARGE on behalf of bonnicoetzer

>> Reply To: CHARGE

>> Sent: Friday, February 17, 2006 6:01 AM

>> To: CHARGE

>> Subject: (unknown)

>>

>> Good day,

>> I am new in this group and I am from South Africa.

>> My best friend,you can call her my sister had a beautifull baby girl

>> on the 4th of January.

>> Minutes after she was born they discovered she had a breathing

>> problem,only to find out she had obstruction in the nose and needed

>> an operation,my friend was devastated,how could something so right

>> turn into something so wrong?

>> 3 weeks later Cherise was still not doing well,she had infection on

>> her lungs,only to find out after the third operation she had

>> incomplete tissue development between the stomach and the

>> lungs,whereafter she got a trache and a tube to the stomach,it is so

>> painfull to see this,she looks so healthy from the outside,then the

>> doctors realised she could have CHARGE.In South Africa the doctors

>> dont know much about this,as this was our first time as well,weve

>> heard of anything like this.Her eyes was tested and there is no

>> problems.

>> Every time my friend went to see Cherise something else was

>> wrong:there also seemed to have been a problem with the heart:the

>> one artery did not close properly,but the doctors at this stage

>> thinks it is minor.Yesterday the reconed she has a growth problem as

>> her weight is tghe same as a new born.It is like these doctors in

>> South Africa gave up hope on this precious little gift from God.I

>> took CHARGE and started searching the web,there is not much,but

>> luckily I found this site and is so pleased that we are not alone.All

>> my friend wants at this stage is for her baby to get better so she

>> can take her home and nurse her there.

>> Can somebody please give us advice and information we are desperate.

>> Thank you kindly.

>>

>>

>>

>>

>>

>>

>> 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 - for CHARGE Syndrome Canada

>> information and membership, please visit http://www.chargesyndrome.ca or

>> email info@... .

>> 8th International

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

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

>>

[Guest guest]

Now that would be a divine connection! To reach out from Cape Town and to

have Steve (or whoever) going to Cape Town would be phenomenal! I hope

Bonnie is close to there. Kim

On 2/17/06 8:04 AM, " pamela.ryan@... "

wrote:

> Dear Bonnie,

> welcome to our lovely group. Where are you in SA?

> I work at the Perkins School for the Blind in Massachusetts, USA and as it

> happens one of our Early Intervention specialists is leaving for Cape Town

> tomorrow to be involved in setting up an early intervention program for

> deafblind babies and children. I don't know his schedule, but if you and

> your sister are close to Cape Town, perhaps he can meet with you or at least

> get you connected to people in your area.

>

> If you can get back to me today (on or off list) I can pass on your

> information to him to take with him.

>

> pam

>

>

> Pamela J. , M.A., CAGS

> Licensed Educational Psychologist

> Perkins School for the Blind, Deafblind Program

> 175 North Beacon St.

> Watertown, MA 02472

>

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

>> From: CHARGE on behalf of bonnicoetzer

>> Reply To: CHARGE

>> Sent: Friday, February 17, 2006 6:01 AM

>> To: CHARGE

>> Subject: (unknown)

>>

>> Good day,

>> I am new in this group and I am from South Africa.

>> My best friend,you can call her my sister had a beautifull baby girl

>> on the 4th of January.

>> Minutes after she was born they discovered she had a breathing

>> problem,only to find out she had obstruction in the nose and needed

>> an operation,my friend was devastated,how could something so right

>> turn into something so wrong?

>> 3 weeks later Cherise was still not doing well,she had infection on

>> her lungs,only to find out after the third operation she had

>> incomplete tissue development between the stomach and the

>> lungs,whereafter she got a trache and a tube to the stomach,it is so

>> painfull to see this,she looks so healthy from the outside,then the

>> doctors realised she could have CHARGE.In South Africa the doctors

>> dont know much about this,as this was our first time as well,weve

>> heard of anything like this.Her eyes was tested and there is no

>> problems.

>> Every time my friend went to see Cherise something else was

>> wrong:there also seemed to have been a problem with the heart:the

>> one artery did not close properly,but the doctors at this stage

>> thinks it is minor.Yesterday the reconed she has a growth problem as

>> her weight is tghe same as a new born.It is like these doctors in

>> South Africa gave up hope on this precious little gift from God.I

>> took CHARGE and started searching the web,there is not much,but

>> luckily I found this site and is so pleased that we are not alone.All

>> my friend wants at this stage is for her baby to get better so she

>> can take her home and nurse her there.

>> Can somebody please give us advice and information we are desperate.

>> Thank you kindly.

>>

>>

>>

>>

>>

>>

>> 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 - for CHARGE Syndrome Canada

>> information and membership, please visit http://www.chargesyndrome.ca or

>> email info@... .

>> 8th International

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

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

>>

[Guest guest]

This has floored me too! To think of how things sometimes work out so

amazingly beautiful... I've been watching and waiting to see if Bonnie is

near enough Capt Town to benefit from this connection.

Michele W

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

Re: (unknown)

Now that would be a divine connection! To reach out from Cape Town and to

have Steve (or whoever) going to Cape Town would be phenomenal! I hope

Bonnie is close to there. Kim

[Guest guest]

This has floored me too! To think of how things sometimes work out so

amazingly beautiful... I've been watching and waiting to see if Bonnie is

near enough Capt Town to benefit from this connection.

Michele W

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

Re: (unknown)

Now that would be a divine connection! To reach out from Cape Town and to

have Steve (or whoever) going to Cape Town would be phenomenal! I hope

Bonnie is close to there. Kim

[Guest guest]

i just relised soemthing another bonnei in here LOL

>

> This has floored me too! To think of how things sometimes work out so

> amazingly beautiful... I've been watching and waiting to see if Bonnie is

> near enough Capt Town to benefit from this connection.

>

> Michele W

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

>

>

> Re: (unknown)

>

> Now that would be a divine connection! To reach out from Cape Town and to

> have Steve (or whoever) going to Cape Town would be phenomenal! I hope

> Bonnie is close to there. Kim

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

i just relised soemthing another bonnei in here LOL

>

> This has floored me too! To think of how things sometimes work out so

> amazingly beautiful... I've been watching and waiting to see if Bonnie is

> near enough Capt Town to benefit from this connection.

>

> Michele W

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

>

>

> Re: (unknown)

>

> Now that would be a divine connection! To reach out from Cape Town and to

> have Steve (or whoever) going to Cape Town would be phenomenal! I hope

> Bonnie is close to there. Kim

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

i just relised soemthing another bonnei in here LOL

>

> This has floored me too! To think of how things sometimes work out so

> amazingly beautiful... I've been watching and waiting to see if Bonnie is

> near enough Capt Town to benefit from this connection.

>

> Michele W

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

>

>

> Re: (unknown)

>

> Now that would be a divine connection! To reach out from Cape Town and to

> have Steve (or whoever) going to Cape Town would be phenomenal! I hope

> Bonnie is close to there. Kim

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

Kim,

truly!!!

pam

Re: (unknown)

Now that would be a divine connection! To reach out from Cape Town and to

have Steve (or whoever) going to Cape Town would be phenomenal! I hope

Bonnie is close to there. Kim

[Guest guest]

sorry I only reply today,my friend is in Johannesburg and I am in Durban.

Please let us know of a doctor in Johannesburg South Africa.

Thank you

Re: (unknown)

>

> Now that would be a divine connection! To reach out from Cape Town and to

> have Steve (or whoever) going to Cape Town would be phenomenal! I hope

> Bonnie is close to there. Kim

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

Sher,

Your one eye must be bad, as the fat old gray headed guy could be Santa!!!!

    JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Re: (unknown)



J/J... Yes, she is a beautiful woman. The guy standing beside her ain't bad either!

Glad to hear you are stable Joe. What good news. I enjoyed stability for a couple of years and now seem to have some progression...

Good luck on your appeal!

Love ya!

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

This is a photo of Joe/Alane , when we met for lunch last week. Isn't she gorgeous? Her diagnosis is great also. Joanie and I really enjoyed meeting her and sharing lunch.     JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

[Guest guest]



Joe... now quit Joe... lol. I fall for every pretty face I see. lol

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

This is a photo of Joe/Alane , when we met for lunch last week. Isn't she gorgeous? Her diagnosis is great also. Joanie and I really enjoyed meeting her and sharing lunch.     JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

[Guest guest]

I have my Facebook set up under Akiba RedWolf... I have someone coming over today to try and fix the stuff the guy last week didn't fix, might need those addresses again (might not). Hugs Akiba -- (unknown) FYI: Facebook pages can be private so no one can see your info or photos or wall posts unless you add them to your friends list. Also, as someone said, you can set it up with any name or info you want, it doesn't have to be your real one. I use Facebook more than any other website and have felt comfortable with the level of privacy and security I've had. Its incredible the number of old friends I have re-found and now keep in touch with, have made many new friends, and also can keep up with family members on a more regular and immediate basis. I hope that didn't sound like a Facebook commercial! LOL I don't work for them or hav anything to do with the site other than using it many times every day!

[Guest guest]

Akiba,

Please don't think that way.Is there any way your friend that has been sending the gifts could help you? You are in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

-----Original Message-----From: akyba@...Sent: Fri, 30 Oct 2009 21:02:45 -0400 (Eastern Daylight Time)To: mserslife Subject: (unknown)

You know, I am ok with the fact that I will probably die soon. I just wish Robbin wouldn't be affected by it, of course he will but I wish he could know how much I love him. Why do I think I will die? How long do you think I will survive on the streets in a wheelchair, in winter? Not long. At least I will be able to look on him from above.

~*~ Akiba~*~

Pragmatic Visionary

The World Revolves around The Sun

MY World Revolves around MY Son

That which does not kill us

Only serves to make us stronger

I must be pretty damned strong by now

[Guest guest]

Akiba,

Please don't think that way.Is there any way your friend that has been sending the gifts could help you? You are in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

-----Original Message-----From: akyba@...Sent: Fri, 30 Oct 2009 21:02:45 -0400 (Eastern Daylight Time)To: mserslife Subject: (unknown)

You know, I am ok with the fact that I will probably die soon. I just wish Robbin wouldn't be affected by it, of course he will but I wish he could know how much I love him. Why do I think I will die? How long do you think I will survive on the streets in a wheelchair, in winter? Not long. At least I will be able to look on him from above.

~*~ Akiba~*~

Pragmatic Visionary

The World Revolves around The Sun

MY World Revolves around MY Son

That which does not kill us

Only serves to make us stronger

I must be pretty damned strong by now

[Guest guest]

Okay sweetie, I don't want to hear you talking like that again. It's not over yet. You have come so far, hang on, I believe that there will be hope for you. A miracle will happen, so please, don't just give up. I'm sure you're feeling yeah, right, what do you know. Well, I don't know too much, but I know that a negative way of thinking, won't do you any good. It will only make you feel worse and make you sick. So please, try to keep some faith. A few weeks ago, you wasn't sure where you're gonna live, you got a place and got settled. You haven't got your little Robbin with you, but you have seen him twice. You were able to spend some time with him. So you can't leave him now, you have to hang in there for him. I'm so worried about you. You're a dear friend and I care about you. And believe me, I

only know you for 2 months, so just imagine how much more these other beautiful people in this group (you said it yourself, they're your online family) care about you. We all love you and worry about you. You'll be in my prayers and thoughts.So take care and try to keep faith.Love youTo: mserslife Sent: Sat, October 31, 2009 3:02:45 AMSubject: (unknown)

You know, I am ok with the fact that I will probably die soon. I just wish Robbin wouldn't be affected by it, of course he will but I wish he could know how much I love him. Why do I think I will die? How long do you think I will survive on the streets in a wheelchair, in winter? Not long. At least I will be able to look on him from above. ~*~ Akiba~*~ Pragmatic Visionary The World Revolves around The Sun MY World Revolves around MY Son That which does not kill us Only serves to make us stronger I must be pretty damned strong by now

[Guest guest]

Okay sweetie, I don't want to hear you talking like that again. It's not over yet. You have come so far, hang on, I believe that there will be hope for you. A miracle will happen, so please, don't just give up. I'm sure you're feeling yeah, right, what do you know. Well, I don't know too much, but I know that a negative way of thinking, won't do you any good. It will only make you feel worse and make you sick. So please, try to keep some faith. A few weeks ago, you wasn't sure where you're gonna live, you got a place and got settled. You haven't got your little Robbin with you, but you have seen him twice. You were able to spend some time with him. So you can't leave him now, you have to hang in there for him. I'm so worried about you. You're a dear friend and I care about you. And believe me, I

only know you for 2 months, so just imagine how much more these other beautiful people in this group (you said it yourself, they're your online family) care about you. We all love you and worry about you. You'll be in my prayers and thoughts.So take care and try to keep faith.Love youTo: mserslife Sent: Sat, October 31, 2009 3:02:45 AMSubject: (unknown)

You know, I am ok with the fact that I will probably die soon. I just wish Robbin wouldn't be affected by it, of course he will but I wish he could know how much I love him. Why do I think I will die? How long do you think I will survive on the streets in a wheelchair, in winter? Not long. At least I will be able to look on him from above. ~*~ Akiba~*~ Pragmatic Visionary The World Revolves around The Sun MY World Revolves around MY Son That which does not kill us Only serves to make us stronger I must be pretty damned strong by now

[Guest guest]

Yeah, try Mike. I forgot about him for a while, but there's a good enough answer. Thanks nne.To: mserslife Sent: Sat, October 31, 2009 3:08:10 AMSubject: RE: (unknown)

Akiba,

Please don't think that way.Is there any way your friend that has been sending the gifts could help you? You are in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://breastcancer patientssoulmate sforlife. bravehost. com/ Anxiety Depression and Breast Cancerhttp://health. groups.yahoo. com/group/ AnxietyDepressio nandBreastCancerAngel Feather Loomerwww.angelfeatherloo mer.blogspot. comThe Cancer Clubwww.cancerclub. com

(unknown)

You know, I am ok with the fact that I will probably die soon. I just wish Robbin wouldn't be affected by it, of course he will but I wish he could know how much I love him. Why do I think I will die? How long do you think I will survive on the streets in a wheelchair, in winter? Not long. At least I will be able to look on him from above.

~*~ Akiba~*~

Pragmatic Visionary

The World Revolves around The Sun

MY World Revolves around MY Son

That which does not kill us

Only serves to make us stronger

I must be pretty damned strong by now