Re: Re: My son was recently diagnose with Charge

[Guest guest]

welcome to the lsit maria where u from im an aussie charger maria o i will b

calling u that from now on so not to confuse anyone lol

>

> --Good evening . I am the father of Sierra, 5 years old.

> Kainan, 2 years of old, does not have CHARGE. We also live here in

> Los Angeles. Sierra has most of her doctors at CHLA (Children's

> Hospital Los Angeles), where she was immediately transported to after

> birth. Recently she has been seen by a few doctors at Cedar Sinai as

> well. Our story is too long to list here on the list. I'm quite bias

> but I highly refer you to my wife, Eloisa. She is Sierra's primary

> advocate and caretaker as I work. She is quite aware of the 'good

> fight', is full of tips, advice and resources in the LA area.

> Furthermore the CHARGE conference is coming to Costa Mesa in two

> weeks. We are going and have went to one in the past in Ohio. They

> are a wealth of information. Please contact my private email and I

> will get you in contact with Elo and the conference if she doesn't

> get in touch with you before. - In

> CHARGE , " Weir "

> wrote:

> >

> > Hi , welcome to the listserv and congrats on the birth of

> . I

> > look forward to hearing many more stories about him. It sounds

> like he is

> > doing great, feel free to ask any questions you have or just vent

> and share.

> > There's also a picture page where many of the kids are featured -

> if you

> > want to add , send me a picture of him privately to

> > kawfolks@... I'll add him. The address for the pictures is:

> > http://www.imagestation.com/album/?id=2117043995

> > Cheers,

> >

> >

> > --

> > Weir

> >

> > Personal Web Site:

> > http://chargesyndrome.info

> >

> > The Adventures of Kennedy Blog:

> > http://chargesyndrome.blogspot.com

> >

> > Secretary, CHARGE Syndrome Foundation Inc:

> > http://www.chargesyndrome.org

> >

> > Email:

> > lisa@...

> >

> > " It is far better to grasp the universe as it really is than to

> persist in

> > delusion, however satisfying and reassuring. " --Carl Sagan

> >

> >

> >

[Guest guest]

Hello, Crystal, thank you for your e-mail. I really appreciate it. Eva is a

beautiful name. Fortunately, is doing ok, he has some issues, but above

all he is an spectacular being, he has teaching me so many things and sometimes

my heart falls in pieces when I see him struggle. I do appreciate your taking

the time to introduce yourself and Eva. Hopefully, we can keep in contact.

Take care of yourself and of your beautiful angel. Sincerely,

supermama95 supermama95@...> wrote:

Welcome ,

My name is Crystal and I have a 2 year old daughter with CHARGE her

name is Eva. She had and ASD and PDA of the heart (2 heart sugeries),

facial paralysis, hearing loss, colubomas of the eyes, one kidney, and

feeding issues. It sounds like is doing pretty well, Eva is not

walking or sitting up yet, but I just take it one day at a time.

I hope you can make yourself at home here and feel free to ask anything

you have questions on.

Crystal and Eva

>

> Hello, everyone, my name is , my son was recently diagnose

> with Charge. was born with many little things that needed

> fixing. He underwent open heart surgery when he was 7 days old. He

> also had gastroesophagal reflux, cleft lip and palette, Graded 5

> reflux on the right kidney. He spent many months in the NICU at

> UCLA. He underwent many tests among all of them a three genetic

tests

> which came back negative. is a beautiful one year old now,

full

> of life and who has given me a lot of joy. It was until now that he

> has been diagnosed and I just need some help to help be the

best

> he can be. I thank you in advance for any tips and information.

> Thank you.

>

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