Re: Sara Tropiano: One of God's Angels

[Guest guest]

Debbie and Lenny,

I don't know if there are any words that would help right now. Please know

we will be praying for all of you.

Bonnie

[Guest guest]

our sympathies and prayers are with you in this difficult time. find comfort in the many lives sara touched in her short time on earth.

kris mom to michael (8) CHaRGE syndrome and kolleen (1)

long branch, nj

[Guest guest]

I am SO SORRY TO HEAR OF YOUR LOSS! Voight

[Guest guest]

Debbie and Lenny, Our prayers are with all of you in this very sad time.

God Bless Sara and Keep her close to his heart.

and Debbie Cachia.

[Guest guest]

Our thought are with you.

The Murray family

, Jay, Mattthew and

[Guest guest]

Debbie and Lenny,

I cannot send enough sympathy your way in this time of great grief. I

am so sorry for your loss and I know she is with God and I only hope that in

time your hearts will heal. was a precious gift and she will always

live on in the hearts that knew her. I will pray for you and your family.

, Eileen 4 1/2 months CHARgE

[Guest guest]

Debbie and Lenny,

I am just sure that our CHARGE angel, , will be there to greet little

Sara. You are in our thoughts and prayers at this difficult time.

Love,

The Ginn Family.

>

>Reply-To: CHARGEegroups

>To: chargeegroups

>Subject: Sara Tropiano: One of God's Angels

>Date: Wed, 8 Nov 2000 00:37:32 -0600 (CST)

>

>It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

>from complications post her surgery. Our family was by our sides

>through the entire ordeal, but no words can describe the feelings

>you have in this situation.

>

>I want to thank all of you who have given us the hope and strength

>to give Sara the chance. We left it in God's hands, and the decision

>was made. Everyone, and most especially the staff at CHOA from

>Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

>our dear friends and nurses, and from NICU, who took

>care of Sara and were there by our side on their day and night off.

>

>Dr. Dewan and his team of over 10, worked for six hours from 7:30am

>till shortly after 1:30pm when we finally got to see Sara wheeled from

>OR to the PICU. She got over the many hurdles from on to off of the

>heart/lung bypass machine. Over an hour later we got to see her at

>her bedside in ICU. Her vitals were apparently stable for the time

>being, but the uphill battle was just beginning.

>

>Many episodes of vitals and saturations were apparent while we

>watched in the background as sometimes a dozen or more medical

>professionals did their work. Medication after medication she was

>given. Baby steps were taken, but larger leaps backwards were

>more the norm.

>

>Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

>and give the facts. She wasn't getting better, and everything he

>could do was on the table. We immediately called back the family,

>who went home only an hour or so before. We called our Rabbi, and

>our other out of town relatives. Soon we were in tears converged

>by her side. The beeping and buzzing was deafening, and soon the

>silence was abound us. All was left was tears and her lifeless

>body.

>

>We loved her for the short amount of time she had to spend with us.

>She touched many lives, but probably her parents she touched the

>deepest. I write this out of catharsis, and out of love for

>our child.

>

>Tomorrow we continue the journey with confronting our 5 year old

>son, , with the news. We're sure he'll amaze us with the

>strength and innocence he has. Empathy is his strong point. He'll

>give us strength.

>

>Funeral arrangements are still pending, we're working with our

>clergy and family to make it happen. We'll let everyone know as

>soon as something is set. Please refrain on flowers, as we'll likely

>ask for any efforts to go towards a charitable donation to

>an organization of our choice, in her name. More later on that

>too.

>

>With love to all,

>

>Debbie and Lenny Tropiano

>

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

>20-22, 2001. Information will be available first in CHARGE Accounts, the

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Debbie and Lenny,

I am just sure that our CHARGE angel, , will be there to greet little

Sara. You are in our thoughts and prayers at this difficult time.

Love,

The Ginn Family.

>

>Reply-To: CHARGEegroups

>To: chargeegroups

>Subject: Sara Tropiano: One of God's Angels

>Date: Wed, 8 Nov 2000 00:37:32 -0600 (CST)

>

>It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

>from complications post her surgery. Our family was by our sides

>through the entire ordeal, but no words can describe the feelings

>you have in this situation.

>

>I want to thank all of you who have given us the hope and strength

>to give Sara the chance. We left it in God's hands, and the decision

>was made. Everyone, and most especially the staff at CHOA from

>Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

>our dear friends and nurses, and from NICU, who took

>care of Sara and were there by our side on their day and night off.

>

>Dr. Dewan and his team of over 10, worked for six hours from 7:30am

>till shortly after 1:30pm when we finally got to see Sara wheeled from

>OR to the PICU. She got over the many hurdles from on to off of the

>heart/lung bypass machine. Over an hour later we got to see her at

>her bedside in ICU. Her vitals were apparently stable for the time

>being, but the uphill battle was just beginning.

>

>Many episodes of vitals and saturations were apparent while we

>watched in the background as sometimes a dozen or more medical

>professionals did their work. Medication after medication she was

>given. Baby steps were taken, but larger leaps backwards were

>more the norm.

>

>Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

>and give the facts. She wasn't getting better, and everything he

>could do was on the table. We immediately called back the family,

>who went home only an hour or so before. We called our Rabbi, and

>our other out of town relatives. Soon we were in tears converged

>by her side. The beeping and buzzing was deafening, and soon the

>silence was abound us. All was left was tears and her lifeless

>body.

>

>We loved her for the short amount of time she had to spend with us.

>She touched many lives, but probably her parents she touched the

>deepest. I write this out of catharsis, and out of love for

>our child.

>

>Tomorrow we continue the journey with confronting our 5 year old

>son, , with the news. We're sure he'll amaze us with the

>strength and innocence he has. Empathy is his strong point. He'll

>give us strength.

>

>Funeral arrangements are still pending, we're working with our

>clergy and family to make it happen. We'll let everyone know as

>soon as something is set. Please refrain on flowers, as we'll likely

>ask for any efforts to go towards a charitable donation to

>an organization of our choice, in her name. More later on that

>too.

>

>With love to all,

>

>Debbie and Lenny Tropiano

>

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

>20-22, 2001. Information will be available first in CHARGE Accounts, the

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

To Debbie and Lenny, and all your family,our deepest

sympathy and prayers goes out to you...there is no

words to say for comfort at this time..I'm certain

that you have all of us in the chargers groups in

prayer and we are mourning with you...nancy ralston

--- paul leblanc wrote:

> Debbie, Lenny,

> You are in our prayers.

> THE LEBLANC FAMILY

> Sara Tropiano: One of

> God's Angels

>

>

> > It give us incredible grief as parents to report

> that our little

> > " Princess " has passed away this evening at 8:05pm

> in Children's PICU

> > from complications post her surgery. Our family

> was by our sides

> > through the entire ordeal, but no words can

> describe the feelings

> > you have in this situation.

> >

> > I want to thank all of you who have given us the

> hope and strength

> > to give Sara the chance. We left it in God's

> hands, and the decision

> > was made. Everyone, and most especially the staff

> at CHOA from

> > Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU

> nurses and of course

> > our dear friends and nurses, and from

> NICU, who took

> > care of Sara and were there by our side on their

> day and night off.

> >

> > Dr. Dewan and his team of over 10, worked for six

> hours from 7:30am

> > till shortly after 1:30pm when we finally got to

> see Sara wheeled from

> > OR to the PICU. She got over the many hurdles

> from on to off of the

> > heart/lung bypass machine. Over an hour later we

> got to see her at

> > her bedside in ICU. Her vitals were apparently

> stable for the time

> > being, but the uphill battle was just beginning.

> >

> > Many episodes of vitals and saturations were

> apparent while we

> > watched in the background as sometimes a dozen or

> more medical

> > professionals did their work. Medication after

> medication she was

> > given. Baby steps were taken, but larger leaps

> backwards were

> > more the norm.

> >

> > Dr. Dewan, as a skilled surgeon had to pull us

> aside to comfort

> > and give the facts. She wasn't getting better,

> and everything he

> > could do was on the table. We immediately called

> back the family,

> > who went home only an hour or so before. We

> called our Rabbi, and

> > our other out of town relatives. Soon we were in

> tears converged

> > by her side. The beeping and buzzing was

> deafening, and soon the

> > silence was abound us. All was left was tears and

> her lifeless

> > body.

> >

> > We loved her for the short amount of time she had

> to spend with us.

> > She touched many lives, but probably her parents

> she touched the

> > deepest. I write this out of catharsis, and out

> of love for

> > our child.

> >

> > Tomorrow we continue the journey with confronting

> our 5 year old

> > son, , with the news. We're sure he'll

> amaze us with the

> > strength and innocence he has. Empathy is his

> strong point. He'll

> > give us strength.

> >

> > Funeral arrangements are still pending, we're

> working with our

> > clergy and family to make it happen. We'll let

> everyone know as

> > soon as something is set. Please refrain on

> flowers, as we'll likely

> > ask for any efforts to go towards a charitable

> donation to

> > an organization of our choice, in her name. More

> later on that

> > too.

> >

> > With love to all,

> >

> > Debbie and Lenny Tropiano

> >

> >

> >

> > " 5th CHARGE Syndrome International Conference,

> Indianapolis, Indiana, July

> > 20-22, 2001. Information will be available first

> in CHARGE Accounts, the

> > CHARGE Syndrome Foundation's newsletter. "

> >

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the

> newsletter)

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> >

> >

>

>

> -------------------------- eGroups Sponsor

>

> " 5th CHARGE Syndrome International Conference,

> Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in

> CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the

> newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

__________________________________________________

[Guest guest]

Debbie and Lenny,

My prayers and thoughts go out to you and your family. Nothing I can say

will take away the grief and pain you are experiencing at this time.

Your heart and soul will always hold all the cherished memories and

beautiful moments spent with Sara, and you will have those to keep forever.

God Bless.

Sara Tropiano: One of God's

Angels

It give us incredible grief as parents to report that our little

" Princess " has passed away this evening at 8:05pm in Children's PICU

from complications post her surgery. Our family was by our sides

through the entire ordeal, but no words can describe the feelings

you have in this situation.

I want to thank all of you who have given us the hope and strength

to give Sara the chance. We left it in God's hands, and the

decision

was made. Everyone, and most especially the staff at CHOA from

Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

our dear friends and nurses, and from NICU, who took

care of Sara and were there by our side on their day and night off.

Dr. Dewan and his team of over 10, worked for six hours from 7:30am

till shortly after 1:30pm when we finally got to see Sara wheeled

from

OR to the PICU. She got over the many hurdles from on to off of the

heart/lung bypass machine. Over an hour later we got to see her at

her bedside in ICU. Her vitals were apparently stable for the time

being, but the uphill battle was just beginning.

Many episodes of vitals and saturations were apparent while we

watched in the background as sometimes a dozen or more medical

professionals did their work. Medication after medication she was

given. Baby steps were taken, but larger leaps backwards were

more the norm.

Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

and give the facts. She wasn't getting better, and everything he

could do was on the table. We immediately called back the family,

who went home only an hour or so before. We called our Rabbi, and

our other out of town relatives. Soon we were in tears converged

by her side. The beeping and buzzing was deafening, and soon the

silence was abound us. All was left was tears and her lifeless

body.

We loved her for the short amount of time she had to spend with us.

She touched many lives, but probably her parents she touched the

deepest. I write this out of catharsis, and out of love for

our child.

Tomorrow we continue the journey with confronting our 5 year old

son, , with the news. We're sure he'll amaze us with the

strength and innocence he has. Empathy is his strong point. He'll

give us strength.

Funeral arrangements are still pending, we're working with our

clergy and family to make it happen. We'll let everyone know as

soon as something is set. Please refrain on flowers, as we'll

likely

ask for any efforts to go towards a charitable donation to

an organization of our choice, in her name. More later on that

too.

With love to all,

Debbie and Lenny Tropiano

-------------------------- eGroups Sponsor

" 5th CHARGE Syndrome International Conference, Indianapolis,

Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts,

the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Debbie, Lenny,

You are in our prayers.

THE LEBLANC FAMILY

Sara Tropiano: One of God's Angels

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

>

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Please know that the Testerman Family has you in their prayers.

Robin, Alan, Ally (charge) and Carson

[Guest guest]

Dear Debbie and Lenny,

Having had two of my own children die, I know the wrenching pain that you are

experiencing and will experience for some time to come. It is every parent's

nightmare to lose a child. It is like losing a part of yourself that you can

never get back. Last evening was our monthly meeting of The Compassionate

Friends, a support group for bereaved parents. I lead our local chapter. A

lot of tears were shed around the group, but it was great to see the parents

who were further along in their grief reaching out to a couple whose daughter

died in July. If you decide you are interested in the group, the national

website is at www.thecompassionatefriends.org, and they have a listing of all

the local chapters.

My heart goes out to you, and please know that our CHARGE family continues to

be there to offer you support and understanding.

Tim

Tim Hartshorne, father of (11), Josh (20), (17), Seth (5), and

(3), and who was 8 and who was 15 months

CHARGE Mailing list wrote:

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

Dear Debbie, Lenny and ,

Our prayers are with you.

Love,

CHARGE Mailing list wrote:

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

Debbie and Lenny,

If you ever need to talk, I have been in your shoes. My son passed

away with CHARGE at 6 months of age. I now have another little CHARGE girl

named Jillian who is 2 1/2, but I still feel the loss of . Please

e-mail me privately if you wish when things settle down. at 3jefmom@...

Even if it's 6 weeks down the road and it hits you again, I will always be

here to talk to about yor emotions and feelings etc....

Love,

Foley

Mom to jackson 5,(welcoming Sara in heaven) and Jillian 2 1/2 cHaRGE

Sara Tropiano: One of God's Angels

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

>

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Dear Debbie and Lenny, I wish I had words to comfort you. I will

pray for your family and your " Princess " Sara. God will welcome her

in his kingdom with open arms, may you find comfort in that

knowledge.

Donna Mom to 8 and Zachary 5 Charger

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the

decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night

off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled

from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with

us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll

likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

[Guest guest]

Debbie and Lenny Tropiano,

I am sad to hear about you little one. I dont realy know what to say,

but I am thinking about you and saddend by your loss.

Hugs

Chantelle

[Guest guest]

Peace to the family and all those who love Sara .

Sincerely,

Jackie Kenley in San Francisco

Jackie Kenley, CDBS

(inside CA only)

ext 21

hm.

[Guest guest]

I can barely type this for my tears are clouding my view. I can only

offer you my deepest condolences and heartfelt feelings. Sara has been

in my thoughts and prayers since you first told us of her.

Please know that you are always welcome here in the future. We would

love to support you in the future with any of your needs.

Please take care of each other and of course your little boy.

With much love

Lezcano

Eugene ORegon

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the

decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled

from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll

likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

[Guest guest]

To Debbie and Lenny, and all your family we are so very truly sorry for your

loss.

, Ed, Maddie(charge) and Philip

******************************************************

Bibo Vaughn

bibovaughn@...

Ph.

Fax.

Mobile

" 640 Kilobytes of computer memory ought to be

enough for anybody. " - Bill Gates, 1981

******************************************************

[Guest guest]

Debbie and Lenny,

Our thoughts and prayers are with you and your family.

Sheryl

[Guest guest]

Debbie and Lenny,

Our thoughts and prayers are with you and your family.

Sheryl

[Guest guest]

Debbie, Lenny,

Your strength and courage are admirable. We were blessed with knowing Sara

(albeit from afar) even if it was for such a short time. My thoughts and

prayers are with you.

le

CHARGE Mailing list wrote:

> It give us incredible grief as parents to report that our little

> " Princess " has passed away this evening at 8:05pm in Children's PICU

> from complications post her surgery. Our family was by our sides

> through the entire ordeal, but no words can describe the feelings

> you have in this situation.

>

> I want to thank all of you who have given us the hope and strength

> to give Sara the chance. We left it in God's hands, and the decision

> was made. Everyone, and most especially the staff at CHOA from

> Dr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course

> our dear friends and nurses, and from NICU, who took

> care of Sara and were there by our side on their day and night off.

>

> Dr. Dewan and his team of over 10, worked for six hours from 7:30am

> till shortly after 1:30pm when we finally got to see Sara wheeled from

> OR to the PICU. She got over the many hurdles from on to off of the

> heart/lung bypass machine. Over an hour later we got to see her at

> her bedside in ICU. Her vitals were apparently stable for the time

> being, but the uphill battle was just beginning.

>

> Many episodes of vitals and saturations were apparent while we

> watched in the background as sometimes a dozen or more medical

> professionals did their work. Medication after medication she was

> given. Baby steps were taken, but larger leaps backwards were

> more the norm.

>

> Dr. Dewan, as a skilled surgeon had to pull us aside to comfort

> and give the facts. She wasn't getting better, and everything he

> could do was on the table. We immediately called back the family,

> who went home only an hour or so before. We called our Rabbi, and

> our other out of town relatives. Soon we were in tears converged

> by her side. The beeping and buzzing was deafening, and soon the

> silence was abound us. All was left was tears and her lifeless

> body.

>

> We loved her for the short amount of time she had to spend with us.

> She touched many lives, but probably her parents she touched the

> deepest. I write this out of catharsis, and out of love for

> our child.

>

> Tomorrow we continue the journey with confronting our 5 year old

> son, , with the news. We're sure he'll amaze us with the

> strength and innocence he has. Empathy is his strong point. He'll

> give us strength.

>

> Funeral arrangements are still pending, we're working with our

> clergy and family to make it happen. We'll let everyone know as

> soon as something is set. Please refrain on flowers, as we'll likely

> ask for any efforts to go towards a charitable donation to

> an organization of our choice, in her name. More later on that

> too.

>

> With love to all,

>

> Debbie and Lenny Tropiano

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

To Debby and Lenny,

Our thoughts and prayers are with you.

the O'Reilly family

[Guest guest]

Dear Lenny, Debbie and ,

Please know that your little angel has been in our thoughts and prayers. May it in some small way comfort you that you are all still in our thoughts and prayers. Love and deepest sympathies. the Rivers family

CHARGE Mailing list wrote:

It give us incredible grief as parents to report that our little "Princess" has passed away this evening at 8:05pm in Children's PICUfrom complications post her surgery. Our family was by our sidesthrough the entire ordeal, but no words can describe the feelingsyou have in this situation.I want to thank all of you who have given us the hope and strengthto give Sara the chance. We left it in God's hands, and the decisionwas made. Everyone, and most especially the staff at CHOA fromDr. Dewan, Dr. Shapiro, Dr. Porter, the PICU nurses and of course our dear friends and nurses, and from NICU, who took care of Sara and were there by our side on their day and night off. Dr. Dewan and his team of over 10, worked for six hours from 7:30am till shortly after 1:30pm when we finally got to see Sara wheeled fromOR to the PICU. She got over the many hurdles from on to off of theheart/lung bypass machine. Over an hour later we got to see her at her bedside in ICU. Her vitals were apparently stable for the time being, but the uphill battle was just beginning.Many episodes of vitals and saturations were apparent while we watched in the background as sometimes a dozen or more medical professionals did their work. Medication after medication she wasgiven. Baby steps were taken, but larger leaps backwards weremore the norm. Dr. Dewan, as a skilled surgeon had to pull us aside to comfortand give the facts. She wasn't getting better, and everything hecould do was on the table. We immediately called back the family,who went home only an hour or so before. We called our Rabbi, andour other out of town relatives. Soon we were in tears convergedby her side. The beeping and buzzing was deafening, and soon thesilence was abound us. All was left was tears and her lifeless body. We loved her for the short amount of time she had to spend with us. She touched many lives, but probably her parents she touched thedeepest. I write this out of catharsis, and out of love forour child. Tomorrow we continue the journey with confronting our 5 year oldson, , with the news. We're sure he'll amaze us with thestrength and innocence he has. Empathy is his strong point. He'llgive us strength. Funeral arrangements are still pending, we're working with our clergy and family to make it happen. We'll let everyone know as soon as something is set. Please refrain on flowers, as we'll likelyask for any efforts to go towards a charitable donation toan organization of our choice, in her name. More later on thattoo.With love to all,Debbie and Lenny Tropiano"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org