Re: Re: CHARGE listserv application to Liz

July 10, 2007

Thank you Everyone to welcome me to this wonderful e-group

Hi Liz, Happy B-Day big .

I still a little bit confused with Charge Syndrome, Braulio was diagnosed with

Charge syndrome 2 weeks ago, Dr's always suspected he had Charge but they took a

while to figure out, still nothing has change I guess every case its different

from each other, some are mild some are bad or really bad, in our case my son

Braulio I called him a gladiator for all the things he gotta go through, he was

first diagnosed with brain damage when he was 4 months old, couple of days

later after staying at St ph Hospital in Tampa FL doctors changed their

diagnosed and every day was something new, they did so many MRI's and Cat Scans

and he finally was diagnosed legally blind BI-COLOBOMA OPTIC NERVE AND RETINAL,

KIDNEY REFLUX (right one) A TINY TUNNEL IN HIS HEART, HYPOTONIC, PLAGIOCEPHALY

(abnormal shape head) already corrected he wear a helmet for about 5 months,

TORTICOLLIS (or wry neck, is a condition in which the head is tilted) HYPOTONIC

(LOW TONE MUSCLE) he has improve a lot

but he does not sit down yet, he can hold his head by now PT helped him a lot.

He also was aspirating liquid to his lungs he was lucky he did not get sick wit

h pneumonia he has a GT since the first week of January. He has seen many

doctors and specialist, I guess the best doctor we ever found was at Bascom

Palmer Eye Institute in Miami, # 1 hospital for eyes in US, this Dr give us more

ideas about COLOBOMA because we were very concerned about his vision, because

the first Ophthalmologists who diagnosed Braulio told us he was blind and

there was not cure for coloboma, I was not satisfied with the Doctors answer

and we look for a second opinion, at Bascom Palmer, Braulio was diagnosed

LEGALLY BLIND, and he actually can see a hair in front of him and that's a good

sign. Last week Braulio started to use hearing aid, he is almost deaf from his

left ear probably 5% of audition and the right one has only 60% we just hope

hearing aid help him to hear better. He goes to PT

twice a week, ST once a week, probably by the end of the year he gets accepted

for EARLY STEPS (State of FL org) they offers early intervention services for

families with infants and toddlers who have developmental delays.

Curiosity that makes a human being an expert in a certain field of knowledge

RIGHT LIZ? I am going to answer your question about my nationality. I don't mind

answering your question but just keep in mind not all Latinos are the same and

that's the beauty of being Latino, different cultures, customs, food, music and

all in one language.

Very proud to be from Ecuador-South America, born in Quito, 14 miles away from

the MIDDLE OF THE WORLD, I am also proud to be a US citizen I consider myself to

have two souls one that communicates in English and the other one in Spanish my

first language, by the way I am against illegal immigration, Tony Dolz may be

100% right with his philosophy but I keep away from politics

keep in touch

Ramiro Arteaga

Mulberry, Florida

Stromsnes Dolz elizabeth@...> wrote:

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

>

July 10, 2007

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

>

July 11, 2007

hola to tu mi carer is from argentina just underneath u i am an auss charger

but i do no lots of spannish so let me tell u or try about my self in

spannish and u can c how i go well ok yo tengo colamobmas de ohos orehas no

seimi circula canales stomago mucho vomitas ie reflux esta tube gastrostmy

yo no progemas corazon pero bad veins y yo am 22 yo trabajo y independant

living skills mi mummy amiga is going to ecuado to degalpigus ilands soon yo

tengo cleft labio palate y yo no tengo hormonas y mal bones hope my spannish

met ur approval lol my carer teaching me if u do msn we can habla mucho i am

ellenhowe@... abrasos besos to u form me and my carer would send u

some to coz espanias sout americanos es muy lindos corazones

>

> Thank you Everyone to welcome me to this wonderful e-group

> Hi Liz, Happy B-Day big .

> I still a little bit confused with Charge Syndrome, Braulio was diagnosed

> with Charge syndrome 2 weeks ago, Dr's always suspected he had Charge but

> they took a while to figure out, still nothing has change I guess every case

> its different from each other, some are mild some are bad or really bad, in

> our case my son Braulio I called him a gladiator for all the things he gotta

> go through, he was first diagnosed with brain damage when he was 4 months

> old, couple of days later after staying at St ph Hospital in Tampa FL

> doctors changed their diagnosed and every day was something new, they did so

> many MRI's and Cat Scans and he finally was diagnosed legally blind

> BI-COLOBOMA OPTIC NERVE AND RETINAL, KIDNEY REFLUX (right one) A TINY TUNNEL

> IN HIS HEART, HYPOTONIC, PLAGIOCEPHALY (abnormal shape head) already

> corrected he wear a helmet for about 5 months, TORTICOLLIS (or wry neck, is

> a condition in which the head is tilted) HYPOTONIC (LOW TONE MUSCLE) he has

> improve a lot

> but he does not sit down yet, he can hold his head by now PT helped him a

> lot. He also was aspirating liquid to his lungs he was lucky he did not get

> sick wit h pneumonia he has a GT since the first week of January. He has

> seen many doctors and specialist, I guess the best doctor we ever found was

> at Bascom Palmer Eye Institute in Miami, # 1 hospital for eyes in US, this

> Dr give us more ideas about COLOBOMA because we were very concerned about

> his vision, because the first Ophthalmologists who diagnosed Braulio told us

> he was blind and there was not cure for coloboma, I was not satisfied with

> the Doctors answer and we look for a second opinion, at Bascom Palmer,

> Braulio was diagnosed LEGALLY BLIND, and he actually can see a hair in front

> of him and that's a good sign. Last week Braulio started to use hearing aid,

> he is almost deaf from his left ear probably 5% of audition and the right

> one has only 60% we just hope hearing aid help him to hear better. He goes

> to PT

> twice a week, ST once a week, probably by the end of the year he gets

> accepted for EARLY STEPS (State of FL org) they offers early intervention

> services for families with infants and toddlers who have developmental

> delays.

> Curiosity that makes a human being an expert in a certain field of

> knowledge RIGHT LIZ? I am going to answer your question about my

> nationality. I don't mind answering your question but just keep in mind not

> all Latinos are the same and that's the beauty of being Latino, different

> cultures, customs, food, music and all in one language.

> Very proud to be from Ecuador-South America, born in Quito, 14 miles away

> from the MIDDLE OF THE WORLD, I am also proud to be a US citizen I consider

> myself to have two souls one that communicates in English and the other one

> in Spanish my first language, by the way I am against illegal immigration,

> Tony Dolz may be 100% right with his philosophy but I keep away from

> politics

> keep in touch

> Ramiro Arteaga

> Mulberry, Florida

> Stromsnes Dolz elizabeth@... >

> wrote: 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

> >

>

July 11, 2007

Muy Bien, Ellen!

Ok, that is as far as I can go!! Aren¹t you the clever thing!!

Xo

pam

>

> hola to tu mi carer is from argentina just underneath u i am an auss charger

> but i do no lots of spannish so let me tell u or try about my self in

> spannish and u can c how i go well ok yo tengo colamobmas de ohos orehas no

> seimi circula canales stomago mucho vomitas ie reflux esta tube gastrostmy

> yo no progemas corazon pero bad veins y yo am 22 yo trabajo y independant

> living skills mi mummy amiga is going to ecuado to degalpigus ilands soon yo

> tengo cleft labio palate y yo no tengo hormonas y mal bones hope my spannish

> met ur approval lol my carer teaching me if u do msn we can habla mucho i am

> ellenhowe@... abrasos besos to u

> form me and my carer would send u

> some to coz espanias sout americanos es muy lindos corazones

>

> On 11/07/07, RAMIRO ARTEAGA ramiroarteaga78@...

> > wrote:

>> >

>> > Thank you Everyone to welcome me to this wonderful e-group

>> > Hi Liz, Happy B-Day big .

>> > I still a little bit confused with Charge Syndrome, Braulio was diagnosed

>> > with Charge syndrome 2 weeks ago, Dr's always suspected he had Charge but

>> > they took a while to figure out, still nothing has change I guess every

>> case

>> > its different from each other, some are mild some are bad or really bad, in

>> > our case my son Braulio I called him a gladiator for all the things he

>> gotta

>> > go through, he was first diagnosed with brain damage when he was 4 months

>> > old, couple of days later after staying at St ph Hospital in Tampa FL

>> > doctors changed their diagnosed and every day was something new, they did

>> so

>> > many MRI's and Cat Scans and he finally was diagnosed legally blind

>> > BI-COLOBOMA OPTIC NERVE AND RETINAL, KIDNEY REFLUX (right one) A TINY

>> TUNNEL

>> > IN HIS HEART, HYPOTONIC, PLAGIOCEPHALY (abnormal shape head) already

>> > corrected he wear a helmet for about 5 months, TORTICOLLIS (or wry neck, is

>> > a condition in which the head is tilted) HYPOTONIC (LOW TONE MUSCLE) he has

>> > improve a lot

>> > but he does not sit down yet, he can hold his head by now PT helped him a

>> > lot. He also was aspirating liquid to his lungs he was lucky he did not get

>> > sick wit h pneumonia he has a GT since the first week of January. He has

>> > seen many doctors and specialist, I guess the best doctor we ever found was

>> > at Bascom Palmer Eye Institute in Miami, # 1 hospital for eyes in US, this

>> > Dr give us more ideas about COLOBOMA because we were very concerned about

>> > his vision, because the first Ophthalmologists who diagnosed Braulio told

>> us

>> > he was blind and there was not cure for coloboma, I was not satisfied with

>> > the Doctors answer and we look for a second opinion, at Bascom Palmer,

>> > Braulio was diagnosed LEGALLY BLIND, and he actually can see a hair in

>> front

>> > of him and that's a good sign. Last week Braulio started to use hearing

>> aid,

>> > he is almost deaf from his left ear probably 5% of audition and the right

>> > one has only 60% we just hope hearing aid help him to hear better. He goes

>> > to PT

>> > twice a week, ST once a week, probably by the end of the year he gets

>> > accepted for EARLY STEPS (State of FL org) they offers early intervention

>> > services for families with infants and toddlers who have developmental

>> > delays.

>> > Curiosity that makes a human being an expert in a certain field of

>> > knowledge RIGHT LIZ? I am going to answer your question about my

>> > nationality. I don't mind answering your question but just keep in mind not

>> > all Latinos are the same and that's the beauty of being Latino, different

>> > cultures, customs, food, music and all in one language.

>> > Very proud to be from Ecuador-South America, born in Quito, 14 miles away

>> > from the MIDDLE OF THE WORLD, I am also proud to be a US citizen I consider

>> > myself to have two souls one that communicates in English and the other one

>> > in Spanish my first language, by the way I am against illegal immigration,

>> > Tony Dolz may be 100% right with his philosophy but I keep away from

>> > politics

>> > keep in touch

>> > Ramiro Arteaga

>> > Mulberry, Florida

>> > Stromsnes Dolz elizabeth@...

>> >

>> > wrote: 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

>>> > >

>> >

July 11, 2007

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?