ATTN: Florida Families/ Susy Morales

[Guest guest]

Ramiro,

I don't know how much she is on the list anymore but Susy Morales is in

Florida - I'll change the subject line so maybe she'll pick up on it...

Glad you found the list - welcome and congratulations on the birth of

Braulio.

>

> Hi Liz, I wish my son was diagnosed as soon he was born, but he looks

> like a normal child, unfortunately he first was diagnosed with coloboma when

> he was 4 moths old, those 4 months were a waste of time for him, If the Dr's

> would have told us we would have ask for help as soon as possible but it did

> not happen, He is hanging in there he is very strong, August 11 last year we

> find out about my son's condition our heart was broken in half when Dr's

> told us he is blind I just could not believe it, I've learned how to deal

> with this, everyday it's a learning process for my whole family, Braulio has

> a big sister she is 3 years and 8 months in perfect conditions. We try to

> speak to her at such a small age and she tries to understand about Braulio,

> she love him a lot as we do to both of them

> Liz do you speak spanish must cuban/americans I know they do.

> I live almost 4 hours away from Miami, I never like Miami the reason why

> is I lived in NY and NJ for many years and I got tired living in big cities.

> chaoo estamos en contacto

> Ramiro Arteaga

> Mulberry , FL

> I would like to get in touch with people from FLORIDA, anyone?

>

> Stromsnes Dolz elizabeth@... >

> wrote: Thank you Ramiro for your answer. I am very interested in your son,

> as well

> as all children with Charge. I am really surprised the diagnosis came so

> soon in case. The doctor in the NICU on the day he was born, due to

> the

> fact that he saw a coloboma in one eye, and the heart defect Tetralogy of

> Fallot, I guess he was pretty knowledgeable in Charge, even though it

> really

> bothered us to be labeled with something so soon, at first we refused to

> believe it! It is amazing to me, this thing, Charge, it can affect people

> of

> all nationality, from anywhere in the world, so rare yet now it seems so

> common. Ramiro, the only reason I asked about nationality, is because

> since

> you are from Florida, I was just curious if you might be Cuban. I was born

> in Cuba and lived in Miami when I was young. I agree with you about

> Latinos.

> We are all similar but different, and you should be proud of who you are

> and

> so am I. Tony is my brother, and I do agree with him about being LEGAL. I

> have been a citizen since I was 15 and I am married to a Norwegian who is

> also LEGAL. I think we should all obey the law. BUT I also agree with you,

> don't worry I am not political like my brother! >L>O>L, and besides, this

> GROUP is not exactly the forum for politics, but just today, I am

> realizing

> my brother is reaching more people than I thought!!

>

> -- 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

> >

>

>

>

>

>

>

[Guest guest]

Thank you , I guess Susy has Nuestro Charge a Spanish e-group, but not many

people participate like this group here, in fact I know couple of people that

live in FL with coloboma, people I found at the COLOBOMA E-GROUP Charlie the

Moderator he is very good with Coloboma

Ramiro Arteaga

Anyone else from FL?

Weir kawfolks@...> wrote: Ramiro,

I don't know how much she is on the list anymore but Susy Morales is in

Florida - I'll change the subject line so maybe she'll pick up on it...

Glad you found the list - welcome and congratulations on the birth of

Braulio.

>

> Hi Liz, I wish my son was diagnosed as soon he was born, but he looks

> like a normal child, unfortunately he first was diagnosed with coloboma when

> he was 4 moths old, those 4 months were a waste of time for him, If the Dr's

> would have told us we would have ask for help as soon as possible but it did

> not happen, He is hanging in there he is very strong, August 11 last year we

> find out about my son's condition our heart was broken in half when Dr's

> told us he is blind I just could not believe it, I've learned how to deal

> with this, everyday it's a learning process for my whole family, Braulio has

> a big sister she is 3 years and 8 months in perfect conditions. We try to

> speak to her at such a small age and she tries to understand about Braulio,

> she love him a lot as we do to both of them

> Liz do you speak spanish must cuban/americans I know they do.

> I live almost 4 hours away from Miami, I never like Miami the reason why

> is I lived in NY and NJ for many years and I got tired living in big cities.

> chaoo estamos en contacto

> Ramiro Arteaga

> Mulberry , FL

> I would like to get in touch with people from FLORIDA, anyone?

>

> Stromsnes Dolz elizabeth@... >

> wrote: Thank you Ramiro for your answer. I am very interested in your son,

> as well

> as all children with Charge. I am really surprised the diagnosis came so

> soon in case. The doctor in the NICU on the day he was born, due to

> the

> fact that he saw a coloboma in one eye, and the heart defect Tetralogy of

> Fallot, I guess he was pretty knowledgeable in Charge, even though it

> really

> bothered us to be labeled with something so soon, at first we refused to

> believe it! It is amazing to me, this thing, Charge, it can affect people

> of

> all nationality, from anywhere in the world, so rare yet now it seems so

> common. Ramiro, the only reason I asked about nationality, is because

> since

> you are from Florida, I was just curious if you might be Cuban. I was born

> in Cuba and lived in Miami when I was young. I agree with you about

> Latinos.

> We are all similar but different, and you should be proud of who you are

> and

> so am I. Tony is my brother, and I do agree with him about being LEGAL. I

> have been a citizen since I was 15 and I am married to a Norwegian who is

> also LEGAL. I think we should all obey the law. BUT I also agree with you,

> don't worry I am not political like my brother! >L>O>L, and besides, this

> GROUP is not exactly the forum for politics, but just today, I am

> realizing

> my brother is reaching more people than I thought!!

>

> -- 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

> >

>

>

>

>

>

>