RE: Just had a baby with charge

[Guest guest]

I am sorry.. Thinking of you and your family all the way from Australia.

[Guest guest]

Dear Sue, I am so sorry for your loss. I can imagine your journey is

one that has left you feeling so many different emotions. God bless

you and your sweet little girl. She will no longer suffer and is

truly, as you say, with all the other angels. Take care and be well,

>

> Hi All, Thanks for all your supports since I joined this group.

Just want to tell you that my daughter pass away yesterday. She has

returned to God and being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Dear Sue, I am so sorry for your loss. I can imagine your journey is

one that has left you feeling so many different emotions. God bless

you and your sweet little girl. She will no longer suffer and is

truly, as you say, with all the other angels. Take care and be well,

>

> Hi All, Thanks for all your supports since I joined this group.

Just want to tell you that my daughter pass away yesterday. She has

returned to God and being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Sue,

I am sorry to hear of your daughter's passing. Know I am thinking of you and

your family.

pam (Boston, MA)

[Guest guest]

Sue,

I am sorry to hear of your daughter's passing. Know I am thinking of you and

your family.

pam (Boston, MA)

[Guest guest]

Sue-

My heart aches for you. I'm so sorry for your loss and for the trauma these

past months must have been for all of you, including Kiera. You are not

alone in losing a child to CHARGE. Maybe you can find some comfort in

knowing that Kiera has a family of CHARGE angels playing with her -- and you

still belong to our CHARGE family as long as you find comfort here.

Michele W

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

[Guest guest]

Sue-

My heart aches for you. I'm so sorry for your loss and for the trauma these

past months must have been for all of you, including Kiera. You are not

alone in losing a child to CHARGE. Maybe you can find some comfort in

knowing that Kiera has a family of CHARGE angels playing with her -- and you

still belong to our CHARGE family as long as you find comfort here.

Michele W

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

[Guest guest]

Michele, Thanks. --Sue

>

> Sue-

> My heart aches for you. I'm so sorry for your loss and for the

trauma these

> past months must have been for all of you, including Kiera. You are

not

> alone in losing a child to CHARGE. Maybe you can find some comfort in

> knowing that Kiera has a family of CHARGE angels playing with her --

and you

> still belong to our CHARGE family as long as you find comfort here.

>

>

> Michele W

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

>

[Guest guest]

Hugs and blessings to you. Kim

> Hi All, Thanks for all your supports since I joined this group. Just want to

> tell you that my daughter pass away yesterday. She has returned to God and

> being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Hugs and blessings to you. Kim

> Hi All, Thanks for all your supports since I joined this group. Just want to

> tell you that my daughter pass away yesterday. She has returned to God and

> being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Hugs and blessings to you. Kim

> Hi All, Thanks for all your supports since I joined this group. Just want to

> tell you that my daughter pass away yesterday. She has returned to God and

> being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Sue,

I know there is nothing that anyone can say or do to make you feel

better,just know your Angel is in heaven,safe in the arms of Jesus.

If roses grow in heaven,Lord,please pick a bunch for me and give it to

Sue,wisper its from me Lord,lift her spirits high today and keep her in your

care.

Please email me at my personal email adress if you need to talk,I also have

an angel in heaven,and know the pain you are going trough.

Love

Bonni - South Africa.

bcoetzer@...

Just had a baby with charge

Hi Everyone,

I just started reading some e-mails in this group. All your e-mails

sound like life is so normal and there can still be time for

relaxation. It is nice to see that.

I just had a baby girl, Keira, two months ago who is a charge baby.

She came with inner ear malformation, possible swallowing

difficulties and airway issue (first was trachea web, then sugotal

stenosis, and now the dr thinks it is tracheomalacia). She is still

in the NICU.

I think I am still in a stage of quite overwhelming and unsure what I

should do next. Doctor wants to give her a trach, and I am not sure

if the trach will come off one day thinking about charge is so

complicated. I have been surfing on web to see how life can be for a

charge child. And deep down I feel that a painful and rough journey

is just started for her.

I look forward to chat with you. Maybe I can eventually find a

balance from this life change. By the way, we live in north New

Jersey in US. Hopefully I can find some of you who may be near by.

Sue

CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

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

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Sue,

I do not think I can find words to say to comfort you at this time. Please

know I will hold your daughter, you and your family closely in my prayers. May

you find that Keira is happy, content and loving you forever.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to