Re: CHARGE listserv application

[Guest guest]

Hi, last night for some reason I was not able to introduce myself I was able

just to type HI, but anyway, My name is Ramiro Arteaga, we live in Central

Florida, Polk County.

My son Braulio is 14 months, he was diagnozed with Charge couple of days ago, he

also has bi-coloboma, kidney reflux, hypotonic and some other minus health

issues, I would love to meet people who can share some experiences

with me and perhaps who will benefit from my

experiences, I didn't know anything about Charge

until my son was diagnozed with it. Well I would

love to hear more from you. I also a member of coloboma I have learned a lot

just reading e-mails from many people around the world

So many unanswered questions. So much unknown future.

How rare is it?

Does it get worse with age?

I only want the best care for Braulio.

Is it painful for the children?

Thanks for your words of encouragement.

Regards,

Ramiro Arteaga

Braulio 14 months (bi-coloboma, charge)

Mulberry, Florida

Weir kawfolks@...> wrote: Hi there -

I'm just double checking that you are interested in CHARGE syndrome and not

just joining to send any type of spam. Where it asks why you want to join, you

simply put " Hi " so I'm just double-checking. We've had an influx of spam lately

and I'm trying to protect the families by double-checking if someone doesn't put

much in there. It doesn't have to be a life story, just " I have a child with

CHARGE " or " I'm interested in learning about CHARGE " or something like that.

Usually the spammers won't take time to do that. Sorry for the extra

precaution; I'm just trying to protect the users.

Moderator, CHARGE Syndrome Listserv

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

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on,

when.

[Guest guest]

Hello Ramiro. Welcome to our group. You will find support, answers,

caring, friendship and much much more here.

mom to (31) CHARGE

>

> Hi, last night for some reason I was not able to introduce myself I

was able just to type HI, but anyway, My name is Ramiro Arteaga, we

live in Central Florida, Polk County.

> My son Braulio is 14 months, he was diagnozed with Charge couple of

days ago, he also has bi-coloboma, kidney reflux, hypotonic and some

other minus health issues, I would love to meet people who can share

some experiences

> with me and perhaps who will benefit from my

> experiences, I didn't know anything about Charge

> until my son was diagnozed with it. Well I would

> love to hear more from you. I also a member of coloboma I have

learned a lot just reading e-mails from many people around the world

> So many unanswered questions. So much unknown future.

> How rare is it?

> Does it get worse with age?

> I only want the best care for Braulio.

> Is it painful for the children?

> Thanks for your words of encouragement.

> Regards,

> Ramiro Arteaga

> Braulio 14 months (bi-coloboma, charge)

> Mulberry, Florida

>

[Guest guest]

Hi there, Ramiro.

I know this time is scary and challenging and

frustrating and can sometimes be very sad.

Our son, Vinny, is now 2 years old and was diagnosed

at 2 weeks old. It has been a rough road. But it has

also been a hopeful and exciting road lately. I

remember when I learned about what CHARGE was, I was

terrified. When I read that there is so much

variability in the symptoms and the outcomes, I

decided to view that as a ray of light and hope.

Because so much is unknown, that suggests that

anything is possible. Our family has found some

life-saving physicians (we are from Michigan) for

Vinny and has relied heavily on our faith and prayers.

You and Braulio will be in our thoughts and prayers.

Welcome to the group,

ina, mom to Luca (4), Vinny (2 with cHARgE), wife

to

--- RAMIRO ARTEAGA ramiroarteaga78@...> wrote:

> Hi, last night for some reason I was not able to

> introduce myself I was able just to type HI, but

> anyway, My name is Ramiro Arteaga, we live in

> Central Florida, Polk County.

> My son Braulio is 14 months, he was diagnozed with

> Charge couple of days ago, he also has bi-coloboma,

> kidney reflux, hypotonic and some other minus health

> issues, I would love to meet people who can share

> some experiences

> with me and perhaps who will benefit from my

> experiences, I didn't know anything about Charge

> until my son was diagnozed with it. Well I would

> love to hear more from you. I also a member of

> coloboma I have learned a lot just reading e-mails

> from many people around the world

> So many unanswered questions. So much unknown

> future.

> How rare is it?

> Does it get worse with age?

> I only want the best care for Braulio.

> Is it painful for the children?

> Thanks for your words of encouragement.

> Regards,

> Ramiro Arteaga

> Braulio 14 months (bi-coloboma, charge)

> Mulberry, Florida

>

> Weir kawfolks@...> wrote: Hi there -

> I'm just double checking that you are interested in

> CHARGE syndrome and not just joining to send any

> type of spam. Where it asks why you want to join,

> you simply put " Hi " so I'm just double-checking.

> We've had an influx of spam lately and I'm trying to

> protect the families by double-checking if someone

> doesn't put much in there. It doesn't have to be a

> life story, just " I have a child with CHARGE " or

> " I'm interested in learning about CHARGE " or

> something like that. Usually the spammers won't

> take time to do that. Sorry for the extra

> precaution; I'm just trying to protect the users.

>

>

> Moderator, CHARGE Syndrome Listserv

>

>

>

>

>

>

>

>

>

>

>

>

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

> Sick sense of humor? Visit Yahoo! TV's Comedy with

> an Edge to see what's on, when.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Sucker-punch spam with award-winning protection.

Try the free Yahoo! Mail Beta.

http://advision.webevents.yahoo.com/mailbeta/features_spam.html

[Guest guest]

welcome i am a charger ull find lots of info on here and lots of support

note to lis re spam and sutff if you get something wierd from me its coz im

at my carers house and her comps saying its got trogens in it even thought

was cleaned out just warning u

>

> Hi there, Ramiro.

>

> I know this time is scary and challenging and

> frustrating and can sometimes be very sad.

>

> Our son, Vinny, is now 2 years old and was diagnosed

> at 2 weeks old. It has been a rough road. But it has

> also been a hopeful and exciting road lately. I

> remember when I learned about what CHARGE was, I was

> terrified. When I read that there is so much

> variability in the symptoms and the outcomes, I

> decided to view that as a ray of light and hope.

> Because so much is unknown, that suggests that

> anything is possible. Our family has found some

> life-saving physicians (we are from Michigan) for

> Vinny and has relied heavily on our faith and prayers.

>

> You and Braulio will be in our thoughts and prayers.

>

> Welcome to the group,

> ina, mom to Luca (4), Vinny (2 with cHARgE), wife

> to

>

> --- RAMIRO ARTEAGA ramiroarteaga78@...>

> wrote:

>

> > Hi, last night for some reason I was not able to

> > introduce myself I was able just to type HI, but

> > anyway, My name is Ramiro Arteaga, we live in

> > Central Florida, Polk County.

> > My son Braulio is 14 months, he was diagnozed with

> > Charge couple of days ago, he also has bi-coloboma,

> > kidney reflux, hypotonic and some other minus health

> > issues, I would love to meet people who can share

> > some experiences

> > with me and perhaps who will benefit from my

> > experiences, I didn't know anything about Charge

> > until my son was diagnozed with it. Well I would

> > love to hear more from you. I also a member of

> > coloboma I have learned a lot just reading e-mails

> > from many people around the world

> > So many unanswered questions. So much unknown

> > future.

> > How rare is it?

> > Does it get worse with age?

> > I only want the best care for Braulio.

> > Is it painful for the children?

> > Thanks for your words of encouragement.

> > Regards,

> > Ramiro Arteaga

> > Braulio 14 months (bi-coloboma, charge)

> > Mulberry, Florida

> >

> > Weir kawfolks@... > wrote: Hi there -

> > I'm just double checking that you are interested in

> > CHARGE syndrome and not just joining to send any

> > type of spam. Where it asks why you want to join,

> > you simply put " Hi " so I'm just double-checking.

> > We've had an influx of spam lately and I'm trying to

> > protect the families by double-checking if someone

> > doesn't put much in there. It doesn't have to be a

> > life story, just " I have a child with CHARGE " or

> > " I'm interested in learning about CHARGE " or

> > something like that. Usually the spammers won't

> > take time to do that. Sorry for the extra

> > precaution; I'm just trying to protect the users.

> >

> >

> > Moderator, CHARGE Syndrome Listserv

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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

> > Sick sense of humor? Visit Yahoo! TV's Comedy with

> > an Edge to see what's on, when.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________________

> Sucker-punch spam with award-winning protection.

> Try the free Yahoo! Mail Beta.

> http://advision.webevents.yahoo.com/mailbeta/features_spam.html

>

>

>

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it

[Guest guest]

Hello Ramiro

I am the grandma of , diagnosed with Charge on the day he was born. None

of us ever heard of Charge before. Still getting over the shock, personally,

but have learned a lot in the last year. My grandson will be one year

old tomorrow and has had 3 heart surgeries and a pacemaker implanted, also

has a Nissen for reflux and is gtube fed. We don't know about the future

exactly. The brain part of this puzzle is the hardest to understand for me.

He had so many life threatening breathing problems and even times when he

coded that we are not sure how much damage to the brain. We can hope for the

best. I am curious, if Braulio is 14 months, why did it take so long to have

it diagnosed as Charge? Please tell me more about him. I am curious about

the hypotonia. Does he hold his head up, or sit up?

Ramiro, I am curious, your name is Spanish, what nationality, if don't mind

me asking.

Best wishes,

Liz

-- Re: CHARGE listserv application

Hello Ramiro. Welcome to our group. You will find support, answers,

caring, friendship and much much more here.

mom to (31) CHARGE

>

> Hi, last night for some reason I was not able to introduce myself I

was able just to type HI, but anyway, My name is Ramiro Arteaga, we

live in Central Florida, Polk County.

> My son Braulio is 14 months, he was diagnozed with Charge couple of

days ago, he also has bi-coloboma, kidney reflux, hypotonic and some

other minus health issues, I would love to meet people who can share

some experiences

> with me and perhaps who will benefit from my

> experiences, I didn't know anything about Charge

> until my son was diagnozed with it. Well I would

> love to hear more from you. I also a member of coloboma I have

learned a lot just reading e-mails from many people around the world

> So many unanswered questions. So much unknown future.

> How rare is it?

> Does it get worse with age?

> I only want the best care for Braulio.

> Is it painful for the children?

> Thanks for your words of encouragement.

> Regards,

> Ramiro Arteaga

> Braulio 14 months (bi-coloboma, charge)

> Mulberry, Florida

>