MD-List : Messages : 19685-19714 of 22650

The funeral will happen on friday, the Home is being very helpful to Terri.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of newspirit41
Sent: Wednesday, April 04, 2007 10:12 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Update on Terri -donations

The funeral home is aware that we are helping raise money for this,
as well as his school. So I don't think they will stop the funeral
due to funds. I'm sure the school will have something before they
receive our money by mail, but I think it will just help as money
come in. I'm sure by next week we will have a better idea of what is
due on it. Hopefully between Adele and Terri we will find out next
week. Dee

--- In MD-List@yahoogroups.com, "knuckles 145" <knuckles145@...>
wrote:

how soon do they need to money? I mean I'm wondering if a credit
card NOW is better than a check in the mail?? I'm planning on
sending a check but didn't know if they needed the money before the
funeral.

Beth M.

On 4/4/07, Adele <jasona65@...> wrote:

Thanks Dee. I hadn't gotten to that yet.

Adele

> > ------------------------------
> >
> > *From:* MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]
*On
> > Behalf Of *newspirit41
> > *Sent:* Wednesday, April 04, 2007 9:05 AM
> > *To:* MD-List@yahoogroups.com
> > *Subject:* [MD-List] Re: Update on Terri

I just talked to the funeral home about donations to help towards the
funeral/cemtary. She advised that it is a few thousand dollars and if
you like to send a donation towards it, you can mail your checks to:

Guisinger Chapel
3718 S. Michigan Steet
South Bend, IN 46614
(574) 291-5880

Make sure your memo line reads: Alexander Stewart Funeral/Cemetary.

I'm sure if you want to use your credit card you can call them
directly.

Dee

> > --- In MD-List@yahoogroups.com <MD-List%
40yahoogroups.com>, "newspirit41"
> > <hope4md@> wrote:

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174

#19713

From: "newspirit41" <hope4md@...>
Date: Wed Apr 4, 2007 2:12 pm
Subject: Re: Update on Terri -donations

newspirit41

Offline

The funeral home is aware that we are helping raise money for this,
as well as his school. So I don't think they will stop the funeral
due to funds. I'm sure the school will have something before they
receive our money by mail, but I think it will just help as money
come in. I'm sure by next week we will have a better idea of what is
due on it. Hopefully between Adele and Terri we will find out next
week. Dee

--- In MD-List@yahoogroups.com, "knuckles 145" <knuckles145@...>
wrote:

how soon do they need to money?  I mean I'm wondering if a credit
card NOW is better than a check in the mail??  I'm planning on
sending a check but didn't know if they needed the money before the
funeral.

Beth M.

On 4/4/07, Adele <jasona65@...> wrote:

Thanks Dee.  I hadn't gotten to that yet.

Adele

> >  ------------------------------
> >
> > *From:* MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]
*On
> > Behalf Of *newspirit41
> > *Sent:* Wednesday, April 04, 2007 9:05 AM
> > *To:* MD-List@yahoogroups.com
> > *Subject:* [MD-List] Re: Update on Terri

I just talked to the funeral home about donations to help towards the
funeral/cemtary. She advised that it is a few thousand dollars and if
you like to send a donation towards it, you can mail your checks to:

Guisinger Chapel
3718 S. Michigan Steet
South Bend, IN 46614
(574) 291-5880

Make sure your memo line reads: Alexander Stewart Funeral/Cemetary.

I'm sure if you want to use your credit card you can call them
directly.

Dee

> > --- In MD-List@yahoogroups.com <MD-List%
40yahoogroups.com>, "newspirit41"
> > <hope4md@> wrote:

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174

#19712

From: Mike Reil <togd2b2@...>
Date: Wed Apr 4, 2007 1:56 pm
Subject: Re:April 2, Alex

togd2b2

Offline

You are in my thoughts and prayers.My deepest and heartfelt sympathy to you and your family. If you ever need to talk just email me. I lost my wife back in November from MMD. Mike

Be a PS3 game guru.
Get your game face on with the latest PS3 news and previews at Yahoo! Games.

#19711

From: "knuckles 145" <knuckles145@...>
Date: Wed Apr 4, 2007 1:42 pm
Subject: Re: Re: Update on Terri

knuckles145us

Offline

how soon do they need to money? I mean I'm wondering if a credit card NOW is better than a check in the mail?? I'm planning on sending a check but didn't know if they needed the money before the funeral.

Beth M.

On 4/4/07, Adele <jasona65@...> wrote:

Thanks Dee. I hadn't gotten to that yet.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of newspirit41
Sent: Wednesday, April 04, 2007 9:05 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Update on Terri

I just talked to the funeral home about donations to help towards the
funeral/cemtary. She advised that it is a few thousand dollars and if
you like to send a donation towards it, you can mail your checks to:

Guisinger Chapel
3718 S. Michigan Steet
South Bend, IN 46614
(574) 291-5880

Make sure your memo line reads: Alexander Stewart Funeral/Cemetary.

I'm sure if you want to use your credit card you can call them
directly.

Dee

--- In MD-List@yahoogroups.com, "newspirit41" <hope4md@...> wrote:

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174

> --- In MD-List@yahoogroups.com , "Adele" <jasona65@> wrote:
>

The funeral is scheduled for Friday afternoon. Money has always been
a big problem for Terri and the boys and Medicaid has told her that
they will only pay for a cremation, which she doesn't want, she had
been working with a funeral home that will give her a break in
price. Alex's school will be holding a fund raiser to raise money
for Alex funereal . If anyone wanted to send something to Terri
instead of flowers, a donation to the funereal home will be great.
She is using Palmer Funereal home, the Guisinger Chapel location
here is their link http://www.palmerfuneralhomes.com/

Thank you all.

Adele

--
It's not about time, its about priorities.

#19710

From: "Adele" <jasona65@...>
Date: Wed Apr 4, 2007 1:34 pm
Subject: RE: Re: Update on Terri

navymom2josh

Offline

Thanks Dee. I hadn’t gotten to that yet.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of newspirit41
Sent: Wednesday, April 04, 2007 9:05 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Update on Terri

I just talked to the funeral home about donations to help towards the
funeral/cemtary. She advised that it is a few thousand dollars and if
you like to send a donation towards it, you can mail your checks to:

Guisinger Chapel
3718 S. Michigan Steet
South Bend, IN 46614
(574) 291-5880

Make sure your memo line reads: Alexander Stewart Funeral/Cemetary.

I'm sure if you want to use your credit card you can call them
directly.

Dee

--- In MD-List@yahoogroups.com, "newspirit41" <hope4md@...> wrote:

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174

> --- In MD-List@yahoogroups.com, "Adele" <jasona65@> wrote:
>

The funeral is scheduled for Friday afternoon. Money has always been
a big problem for Terri and the boys and Medicaid has told her that
they will only pay for a cremation, which she doesn't want, she had
been working with a funeral home that will give her a break in
price. Alex's school will be holding a fund raiser to raise money
for Alex funereal . If anyone wanted to send something to Terri
instead of flowers, a donation to the funereal home will be great.
She is using Palmer Funereal home, the Guisinger Chapel location
here is their link http://www.palmerfuneralhomes.com/

Thank you all.

Adele

#19709

From: "newspirit41" <hope4md@...>
Date: Wed Apr 4, 2007 1:05 pm
Subject: Re: Update on Terri

newspirit41

Offline

I just talked to the funeral home about donations to help towards the
funeral/cemtary. She advised that it is a few thousand dollars and if
you like to send a donation towards it, you can mail your checks to:

Guisinger Chapel
3718 S. Michigan Steet
South Bend, IN  46614
(574) 291-5880

Make sure your memo line reads: Alexander Stewart Funeral/Cemetary.

I'm sure if you want to use your credit card you can call them
directly.

Dee

--- In MD-List@yahoogroups.com, "newspirit41" <hope4md@...> wrote:

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174

> --- In MD-List@yahoogroups.com, "Adele" <jasona65@> wrote:
>

The funeral is scheduled for Friday afternoon.  Money has always been
a big problem for Terri and the boys and Medicaid has told her that
they will only pay for a cremation, which she doesn't want,  she had
been working with a funeral home that will give her a break in
price.  Alex's school will be holding a fund raiser to raise money
for Alex funereal .  If anyone wanted to send something to Terri
instead of flowers,  a donation to the funereal home will be great.
She is using Palmer Funereal home, the Guisinger Chapel location
here is their link  http://www.palmerfuneralhomes.com/

   Thank you all.

  Adele

#19708

From: "newspirit41" <hope4md@...>
Date: Wed Apr 4, 2007 12:41 pm
Subject: Re: Update on Terri

newspirit41

Offline

Here is the link about Alex at the Funeral Home:

http://www.palmerfuneralhomes.com/viewobit.cfm?ID=174



--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:

I spoke to Terri for quit a while last night.  She is doing OK as are
the boys.  Probably at the funereal, it will hit them all.  She is
totally overwhelmed by the out pouring of support for all of you.



The funeral is scheduled for Friday afternoon.  Money has always been
a big problem for Terri and the boys and Medicaid has told her that
they will only pay for a cremation, which she doesn't want,  she had
been working with a funeral home that will give her a break in
price.  Alex's school will be holding a fund raiser to raise money
for Alex funereal .  If anyone wanted to send something to Terri
instead of flowers,  a donation to the funereal home will be great.
She is using Palmer Funereal home, the Guisinger Chapel location
here is their link  http://www.palmerfuneralhomes.com/



  Thank you all.



  Adele

#19707

From: "Pichaske, Marie" <mpichaske@...>
Date: Wed Apr 4, 2007 12:33 pm
Subject: RE: Update on Terri

mpichaske

Offline

Thanks for the information.

Marie

Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Avenue, N.W.
Washington, DC 20010
(202) 884-6029 (voice)
(202) 884-6014 (fax)
mpichaske@...

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Adele
Sent: Wednesday, April 04, 2007 8:23 AM
To: DMDTransitions@...; dmdsupport@yahoogroups.com; MD-List@yahoogroups.com; dmdpioneers@yahoogroups.com
Subject: [MD-List] Update on Terri

I spoke to Terri for quit a while last night. She is doing OK as are the boys. Probably at the funereal, it will hit them all. She is totally overwhelmed by the out pouring of support for all of you.

The funeral is scheduled for Friday afternoon. Money has always been a big problem for Terri and the boys and Medicaid has told her that they will only pay for a cremation, which she doesn’t want, she had been working with a funeral home that will give her a break in price. Alex’s school will be holding a fund raiser to raise money for Alex funereal . If anyone wanted to send something to Terri instead of flowers, a donation to the funereal home will be great. She is using Palmer Funereal home, the Guisinger Chapel location here is their link http://www.palmerfuneralhomes.com/

Thank you all.

Adele

#19706

From: "Adele" <jasona65@...>
Date: Wed Apr 4, 2007 12:22 pm
Subject: Update on Terri

navymom2josh

Offline

I spoke to Terri for quit a while last night. She is doing OK as are the boys. Probably at the funereal, it will hit them all. She is totally overwhelmed by the out pouring of support for all of you.

Thank you all.

Adele

#19705

From: "Joanne & David Wechsler" <jodavew@...>
Date: Wed Apr 4, 2007 9:31 am
Subject: Re: April 2, Alex

jodave486

Offline

Hi Terri,

I'm very sorry for your loss. You all are in my thoughts and prayers.

Best, Joanne

----- Original Message -----

From: Terri

To: md-list@yahoogroups.com

Sent: Tuesday, April 03, 2007 6:50 AM

Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details anyone wanted. I will say basic info and you can write me off list if you want more.
Yesterday (April 2) I was without a nurse for Alex because they were unable to find anyone to cover the shift. Luckily Nathan and Alex's aid was here early, and a friend was also here. Alex's heart rate dropped drastically around 12:30 or 1 pm yesterday after noon. He died in peace with no pain and managed to tell me he loved me as he died.
Terri

It�s tax season, make sure to follow these few simple tips Check it out!

#19704

From: "wanda_pope" <wanda_pope@...>
Date: Wed Apr 4, 2007 1:47 am
Subject: Re: update, Alex!

wanda_pope

Offline

--- In MD-List@yahoogroups.com, Vikki Stefans <vstefans@...> wrote:
>I am so very sorry for your loss. I pray comfort and peace in this
very hard time. Wanda mom of son with DMD that is 15.







> Terri, I'm so sorry - you should have had longer with Alex, the bad
> cardiomyopathy when it happens is a real tragedy for us and our
young
> ones...I wish there was a medication to fix it, or just anything
more that
> could be done. We are dealing with some major issues and heartaches
with
> my parents right now too, but I will save a piece of my heart to go
out to
> you, and I so wish there was more that just condoleneces and
prayers to
> send your way. hugs,
>
> Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at
UAMS
> and Arkansas Children's Hospital.  Working Mom of Sarah T. and
Michael C.,
> and wife of Henry Stefans. Every mom is a working mom!- OK, dads
too.
>
> On Thu, 29 Mar 2007, Terri wrote:
>
> > I wanted to thank-all of you on your support especially with
Alex. I
> > just wanted to let you know that test results from the complete
blood
> > workup done on Alex tuesday, show that he is at critical levels,
a
> > couple of his meds have been discontinued due to critical highs
(digoxin
> > and potassium) and the doctors say that he only has 2 or 3 days
to live.
> > I grateful that he made it to his 16 birthday but so broken
hearted as I
> > watch my son die before my eyes and there isn't anything we can
do this
> > time but make him comfortable. I am grateful that I had a year
and a
> > half I wasn't going to have but so sad, I don't want to lose my
child. I
> > pray for a miracle but I know this time he may not survive. I
want to
> > thank you all for your continued support.
>

#19703

From: denger2@...
Date: Wed Apr 4, 2007 12:09 am
Subject: Re: April 2, Alex

adenger

Offline

Dear Terri,

My deepest sympathies for your loss. I cannot say more than what others have already expressed. I pray time will heal your greif.

Brian Denger
Maine

Check Out the new free AIM(R) Mail -- 2 GB of storage and industry-leading spam and email virus protection.

#19702

From: ILuvMere@...
Date: Tue Apr 3, 2007 5:57 pm
Subject: Re: April 2, Alex

iluvmere2003

Offline

Terri,

I am so sorry but I'm glad Alex was peaceful and that he was able to speak such good words before the end.

Carol

See what's free at AOL.com.

#19701

From: "LUCY SWANEPOEL" <lucie@...>
Date: Tue Apr 3, 2007 5:06 pm
Subject: Re: April 2, Alex

lucie@...

Terri

Our deepest sympathy. May God Bless you.

You are in our thoughts and prayers.

Luciana

Mom to Ijay 14 SMA 2

----- Original Message -----

From: Greg Evans

To: MD-List@yahoogroups.com

Sent: Tuesday, April 03, 2007 5:18 PM

Subject: RE: [MD-List] April 2, Alex

Terri

My eyes are wet and my emotions are flowing with deepest sympathy to you. Know that he is free and happy now and we will all be joining him near term. Our bodies are merely a garage to temporarily park our spirits.

Greg & Davey 14 DMD

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Pichaske, Marie
Sent: Tuesday, April 03, 2007 9:32 AM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] April 2, Alex

Dear Terri,
I�m keeping you and Alex in my thoughts and prayers today. My deepest sympathy. Marie

On 4/3/07 6:54 AM, "Benson, Barbara D." <bbenson@draper.com> wrote:

Terri,
There are really no words - just know that my heart goes out to you and your family,

Barbara

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, April 03, 2007 6:51 AM
To: md-list@yahoogroups.com
Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details anyone wanted. I will say basic info and you can write me off list if you want more.
Yesterday (April 2) I was without a nurse for Alex because they were unable to find anyone to cover the shift. Luckily Nathan and Alex's aid was here early, and a friend was also here. Alex's heart rate dropped drastically around 12:30 or 1 pm yesterday after noon. He died in peace with no pain and managed to tell me he loved me as he died.
Terri

It�s tax season, make sure to follow these few simple tips Check it out! <http://articles.moneycentral.msn.com/Taxes/PreparationTips/PreparationTips.aspx?icid=WLMartagline>

#19700

From: "alice hirchfield" <alicehirchfield@...>
Date: Tue Apr 3, 2007 4:50 pm
Subject: Re: April 2, Alex

derby2683

Offline

hi there

i am really sorry for you at this time , and you are in my thoughts,

alice and harry 3 (DMD uk)


>From: SKumbera@...
>Reply-To: MD-List@yahoogroups.com
>To: MD-List@yahoogroups.com
>Subject: Re: [MD-List] April 2, Alex
>Date: Tue, 03 Apr 2007 11:21:43 -0400
>
>I am so sorry Terri. May god be with you and yours now at your time in
>need.
>Sue mom of Jon DMD age21
>
>-----Original Message-----
>From: momdmd@...
>To: md-list@yahoogroups.com
>Sent: Tue, 3 Apr 2007 5:50 AM
>Subject: [MD-List] April 2, Alex
>
>
>
>I wrote several emails last night but wasn't sure how many details
>anyone wanted. I will say basic info and you can write me off list if
>you want more.
>Yesterday (April 2) I was without a nurse for Alex because they were
>unable to find anyone to cover the shift. Luckily Nathan and Alex's aid
>was here early, and a friend was also here. Alex's heart rate dropped
>drastically around 12:30 or 1 pm yesterday after noon. He died in peace
>with no pain and managed to tell me he loved me as he died.
>Terri
>
>
>
>[Image Removed]
>
>--------
>It’s tax season, make sure to follow these few simple tips Check it
>out!
>
>
>
>________________________________________________________________________
>AOL now offers free email to everyone.  Find out more about what's free
>from AOL at AOL.com.
>=0

#19699

From: "Greg Evans" <gregevans01@...>
Date: Tue Apr 3, 2007 3:18 pm
Subject: RE: April 2, Alex

gregevans01@...

Terri

My eyes are wet and my emotions are flowing with deepest sympathy to you. Know that he is free and happy now and we will all be joining him near term. Our bodies are merely a garage to temporarily park our spirits.

Greg & Davey 14 DMD

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Pichaske, Marie
Sent: Tuesday, April 03, 2007 9:32 AM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] April 2, Alex

Dear Terri,
I�m keeping you and Alex in my thoughts and prayers today. My deepest sympathy. Marie

On 4/3/07 6:54 AM, "Benson, Barbara D." <bbenson@draper.com> wrote:

Terri,
There are really no words - just know that my heart goes out to you and your family,

Barbara

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, April 03, 2007 6:51 AM
To: md-list@yahoogroups.com
Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details anyone wanted. I will say basic info and you can write me off list if you want more.
Yesterday (April 2) I was without a nurse for Alex because they were unable to find anyone to cover the shift. Luckily Nathan and Alex's aid was here early, and a friend was also here. Alex's heart rate dropped drastically around 12:30 or 1 pm yesterday after noon. He died in peace with no pain and managed to tell me he loved me as he died.
Terri

It�s tax season, make sure to follow these few simple tips Check it out! <http://articles.moneycentral.msn.com/Taxes/PreparationTips/PreparationTips.aspx?icid=WLMartagline>

#19698

From: SKumbera@...
Date: Tue Apr 3, 2007 3:21 pm
Subject: Re: April 2, Alex

SKumbera@...

I am so sorry Terri. May god be with you and yours now at your time in
need.
Sue mom of Jon DMD age21

-----Original Message-----
From: momdmd@...
To: md-list@yahoogroups.com
Sent: Tue, 3 Apr 2007 5:50 AM
Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details
anyone wanted. I will say basic info and you can write me off list if
you want more.
Yesterday (April 2) I was without a nurse for Alex because they were
unable to find anyone to cover the shift. Luckily Nathan and Alex's aid
was here early, and a friend was also here. Alex's heart rate dropped
drastically around 12:30 or 1 pm yesterday after noon. He died in peace
with no pain and managed to tell me he loved me as he died.
Terri

[Image Removed]

--------
It’s tax season, make sure to follow these few simple tips Check it
out!

________________________________________________________________________
AOL now offers free email to everyone.  Find out more about what's free
from AOL at AOL.com.
=0

#19697

From: "newspirit41" <hope4md@...>
Date: Tue Apr 3, 2007 2:29 pm
Subject: Re: April 2, Alex

newspirit41

Offline

Dear Terri...I'm so so ever sorry that it came to this. My heart goes
to you and your family during this very sad time.  Our thoughts and
prayers are with you and your family. Please let us know the funeral
arrangements or is there something special in honor of Alex for
contributions and/or flowers.

The Muscular dysstrophy family mourns your loss...& know now he is in
a better place with a new body.

safe hugz, Dee & Tim

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@...>
wrote:
>
> Dear Terri,
> I�m keeping you and Alex in my thoughts and prayers today. My
deepest
> sympathy. Marie
>
>
> On 4/3/07 6:54 AM, "Benson, Barbara D." <bbenson@...> wrote:
>
> >
> >
> >
> >
> > Terri,
> > There are really no words - just know that my heart goes out to
you and your
> > family,
> >
> > Barbara
> >
> >
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> > Terri
> > Sent: Tuesday, April 03, 2007 6:51 AM
> > To: md-list@yahoogroups.com
> > Subject: [MD-List] April 2, Alex
> >
> >
> >
> > I wrote several emails last night but wasn't sure how many
details anyone
> > wanted. I will say basic info and you can write me off list if
you want more.
> > Yesterday (April 2) I was without a nurse for Alex because they
were unable to
> > find anyone to cover the shift. Luckily Nathan and Alex's aid was
here early,
> > and a friend was also here. Alex's heart rate dropped drastically
around 12:30
> > or 1 pm yesterday after noon. He died in peace with no pain and
managed to
> > tell me he loved me as he died.
> > Terri
> >
> >>
> >
> >
> > It�s tax season, make sure to follow these few simple tips Check
it out!
> >
<http://articles.moneycentral.msn.com/Taxes/PreparationTips/Preparatio
nTips.as
> > px?icid=WLMartagline>
> >
> >
> >
>

#19696

From: "Pichaske, Marie" <mpichaske@...>
Date: Tue Apr 3, 2007 1:32 pm
Subject: Re: April 2, Alex

mpichaske

Offline

Dear Terri,
I’m keeping you and Alex in my thoughts and prayers today. My deepest sympathy. Marie

On 4/3/07 6:54 AM, "Benson, Barbara D." <bbenson@...> wrote:

Terri,
There are really no words - just know that my heart goes out to you and your family,

Barbara

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, April 03, 2007 6:51 AM
To: md-list@yahoogroups.com
Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details anyone wanted. I will say basic info and you can write me off list if you want more.
Yesterday (April 2) I was without a nurse for Alex because they were unable to find anyone to cover the shift. Luckily Nathan and Alex's aid was here early, and a friend was also here. Alex's heart rate dropped drastically around 12:30 or 1 pm yesterday after noon. He died in peace with no pain and managed to tell me he loved me as he died.
Terri

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#19695

From: "Adele" <jasona65@...>
Date: Tue Apr 3, 2007 1:26 pm
Subject: RE: April 2, Alex

navymom2josh

Offline

My poor Terri, I morn with you. If you need to talk, you know I’m always here for you.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, April 03, 2007 6:51 AM
To: md-list@yahoogroups.com
Subject: [MD-List] April 2, Alex

I wrote several emails last night but wasn't sure how many details anyone wanted. I will say basic info and you can write me off list if you want more.
Yesterday (April 2) I was without a nurse for Alex because they were unable to find anyone to cover the shift. Luckily Nathan and Alex's aid was here early, and a friend was also here. Alex's heart rate dropped drastically around 12:30 or 1 pm yesterday after noon. He died in peace with no pain and managed to tell me he loved me as he died.
Terri

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#19694

From: "Benson, Barbara D." <bbenson@...>
Date: Tue Apr 3, 2007 10:54 am
Subject: RE: April 2, Alex

bbenson@...

Terri,

There are really no words - just know that my heart goes out to you and your family,

Barbara

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#19693

From: Terri <momdmd@...>
Date: Tue Apr 3, 2007 10:50 am
Subject: April 2, Alex

imblueangel

Offline

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#19692

From: Michael Raymond <mbrstooge@...>
Date: Mon Apr 2, 2007 4:38 pm
Subject: New Therapeutic Insight Into Duchenne Muscular Dystrophy

mbrstooge

Offline

You can read more of this story here.

From ScienceDaily

In the April 1st issue of Genes & Development, Dr. Bruce Spiegelman (Dana Farber Cancer Institute) and colleagues identify a key genetic component of and possible therapeutic target for Duchenne muscular dystrophy.

Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy, affecting about 1 in 3000 males each year. It is an X-linked recessive disease, in which mutations in the dystrophin gene causes progressive and degenerative muscle weakness. DMD is generally lethal by age 30.

Dr. Spiegelman and colleagues found that a protein called PGC-1alpha regulates the point of connection between the end of a motor neuron and a muscle fiber -- what researchers call the "neuromuscular junction." Electrical impulses travel through the neuromuscular junction, ultimately causing the muscle to contract. Previous research has shown that PGC-1alpha expression is induced by physical exercise and motor neuron activity, and mediates the anti-atrophic effects of nerve activity on muscle mass.

Sincerely,

Michael Raymond

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#19691

From: "babykaylasmom" <Lisa@...>
Date: Mon Apr 2, 2007 4:01 pm
Subject: Re: update, Alex!

babykaylasmom

Offline

Terri,

My heart is breaking for you and your family.  I wish there were words
that could make things better but I know there is nothing that can
take away the pain you must be feeling.  Please know that you and Alex
are in my thoughts and prayers every day.

Love and Prayers,

Lisa Vittek

Mother of Kayla
20 months old, born with Congenital Myotonic Muscular Dystrophy.



--- In MD-List@yahoogroups.com, Terri <momdmd@...> wrote:
>
> Thank you.Alex's birthday was Thursday March 29 and he is 16.
> Terri
>
>
> To: MD-List@...: SKumbera@...: Sat, 31 Mar 2007 11:29:05
-0400Subject: Re: [MD-List] update, Alex!
>
>
>
>
> Hello Terri and Alex,You are in our thoughts and prayer. May god be
with you at this most difficult time. How old is Alex?Sue mom of Jon
age 21 DMD-----Original Message-----From: momdmd@...:
dmdsupport@yahoogroups.com; mdaalltheway@yahoogroups.com;
dmdpioneers@yahoogroups.com; md-list@yahoogroups.com;
npventsupport@...: Thu, 29 Mar 2007 10:57 PMSubject: [MD-List] update,
Alex!I wanted to thank-all of you on your support especially with
Alex. I just wanted to let you know that test results from the
complete blood workup done on Alex tuesday, show that he is at
critical levels, a couple of his meds have been discontinued due to
critical highs (digoxin and potassium) and the doctors say that he
only has 2 or 3 days to live. I grateful that he made it to his 16
birthday but so broken hearted as I watch my son die before my eyes
and there isn't anything we can do this time but make him comfortable.
I am grateful that I had a year and a half I wasn't going to have but
so sad, I don't want to lose my child. I pray for a miracle but I know
this time he may not survive. I want to thank you all for your
continued support.Terri--------Take a break and play crossword puzzles
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#19690

From: "Lanae Squires" <lmssquires@...>
Date: Mon Apr 2, 2007 3:03 pm
Subject: Re: update, Alex!

freckeledscr...

Offline

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Dear group and family of Alex, This is a very hard time for Alex and family and possibly others too. We all know that because of our disease we will be facing death earlier than most. This is a hard realization, but the dying process does not have to be hard if we all prepare in advance for it. I am currently taking a death, dying and bereavment class as an elective for my degree and I have learned so much about dying and the many ways there are to make the process easier on all involved. The first thing is to think about it, realize that it is going to happen and then make plans. This may sound weird, but planning for this can be helpful on the person dying and their families. Go to the funeral home and plan your funeral or even write down a few wishes (what you want to wear, songs, poems, flowers, open or closed casket) just a few basic wishes. Fill out a living will or a document called the "five Wishes" you can find info on this at www.agingwithdignity.org or call 1-888-594-7437. It is not easy to fill out there is some soul searching involved, but in the end I think we will all be happy that we did. I am planning on giving this to my entire family. They will probobably thinik I'm nuts, but I don't care.

To Teri and Alex treasure these last moments together. Talkk about the things on your mind and in your heart. I will pray that you wil feel the arms of our lord and saviour holding you and uplifting you durring this time.

Lanae

Never underestimate the power of a kind word or smile

#19689

From: George <gbsona40@...>
Date: Mon Apr 2, 2007 2:50 pm
Subject: Re: Re: Bi-Pap as ventilator

gibsona40

Offline

As Joyce pointed out, Bach is literally the leading physician when it comes to NIV. He's been at the forefront for many years, developing the techniques that others are adopting. Jonathan Finder is another physician who's been very active in respiratory care of people with DMD and he keeps a list of respiratory physicians organized by state and country who have an interest in DMD, including two in Indiana, you might check nearby states as well:

http://www.pitt.edu/~finder/respdocMD.html

Here is some interesting reading material on respiratory care in DMD that discusses non-invasive ventilation, some by or about Bach, some by Finder, some more technical, some less technical, and a couple of other groups where you can find knowledgeable people:

http://www.mda.org/publications/Quest/q55breathe.html

http://www.mda.org/publications/Quest/q56freshair.html

http://www.us.elsevierhealth.com/product.jsp?isbn=1560536047

http://www.us.elsevierhealth.com/product.jsp?isbn=1560535490

http://www.rtmagazine.com/issues/articles/2004-07_05.asp

http://www.mda.org/publications/Quest/q105trach.html

http://health.groups.yahoo.com/group/nivusers/

http://health.groups.yahoo.com/group/dmdpioneers/

http://ajrccm.atsjournals.org/cgi/reprint/170/4/456

George

L <cloud_8994@...> wrote:

Joyce,
I have a few questions about your son's experience. Right now we are
very much on our own. Nathan has not seen a respiratory professional
in 2 years. The last one he saw moved out of state. He was
unfamiliar with a DMD patient using non-invasive ventilation. Nathan
is not experiencing any difficulties with the equipment we use. But
we do feel like we would benefit from the experience of others. I
was wondering how long your son has needed 24 hour respiratory
assistance. Does your son have a feeding tube? Does he have
scoliosis?
I appreciate any help you might have to offer.
Thanks, Laura in Indiana

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#19688

From: JoyceGlass@...
Date: Mon Apr 2, 2007 2:11 pm
Subject: Re: Re: Bi-Pap as ventilator

JoyceGlass@...

My son does not have a feeding tube or very severe scoliosis. He has used the portable ventilator for the past couple of years. He has used a bipap at night for about seven or eight years. He can breathe on his own but is much more comfortable with the ventilator. Do you have someone at the MDA clinic that is supportive of non-invasive ventilation? You should try to find someone.

When my son was 24 he got the flu and that turned into bronchitis. He had to be hospitalized for about five days. He got better but after that we went to see Dr. Bach in New Jersey. He is the best doctor to see about non-invasive ventilation. For more information there is a group of people called the NIV users group. I think they are a Yahoo group. They are very helpful. If I can help you please let me know.

Joyce

-----Original Message-----
From: cloud_8994@...
To: MD-List@yahoogroups.com
Sent: Mon, 2 Apr 2007 9:46 AM
Subject: [MD-List] Re: Bi-Pap as ventilator

Joyce,
I have a few questions about your son's experience. Right now we are
very much on our own. Nathan has not seen a respiratory professional
in 2 years. The last one he saw moved out of state. He was
unfamiliar with a DMD patient using non-invasive ventilation. Nathan
is not experiencing any difficulties with the equipment we use. But
we do feel like we would benefit from the experience of others. I
was wondering how long your son has needed 24 hour respiratory
assistance. Does your son have a feeding tube? Does he have
scoliosis?
I appreciate any help you might have to offer.
Thanks, Laura in Indiana

--- In MD-List@yahoogroups.com, JoyceGlass@... wrote:
>
> My son is 32 and chose not to have the trach. also. Instead of a
bipap during the day he uses a small portable ventilator to help
him. It is a LTV 800 made by Pulmonetic Systems. It is much more
portable than a bipap and has batteries so that he can go out. It
even has a car adapter so it can be plugged into the outlet in the
van. Here is the link: www.pulmonetic.com
> Joyce
>
> -----Original Message-----
> From: cloud_616@...
> To: MD-List@yahoogroups.com
> Sent: Mon, 26 Mar 2007 8:25 AM
> Subject: [MD-List] Bi-Pap as ventilator
>
>
> Nathan (21) (with DMD) chose to reject a tracheaostomy years ago. 2
> years ago he began using the Bi-Pap during the day. He has been
using
> it 24/7 for almost 2 years now. Anyone else in this position?
> Laura in Indiana
>
>
>
>
__________________________________________________________
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#19687

From: "L" <cloud_8994@...>
Date: Mon Apr 2, 2007 1:46 pm
Subject: Re: Bi-Pap as ventilator

cloud_8994

Offline

Joyce,
I have a few questions about your son's experience.  Right now we are
very much on our own.  Nathan has not seen a respiratory professional
in 2 years.  The last one he saw moved out of state.  He was
unfamiliar with a DMD patient using non-invasive ventilation. Nathan
is not experiencing any difficulties with the equipment we use.  But
we do feel like we would benefit from the experience of others.  I
was wondering how long your son has needed 24 hour respiratory
assistance.  Does your son have a feeding tube?  Does he have
scoliosis?
I appreciate any help you might have to offer.
Thanks,  Laura in Indiana

--- In MD-List@yahoogroups.com, JoyceGlass@... wrote:
>
> My son is 32 and chose not to have the trach. also.  Instead of a
bipap during the day he uses a small portable ventilator to help
him.  It is a LTV 800 made by Pulmonetic Systems.  It is much more
portable than a bipap and has batteries so that he can go out.  It
even has a car adapter so it can be plugged into the outlet in the
van.  Here is the link:  www.pulmonetic.com
>   Joyce
>
> -----Original Message-----
> From: cloud_616@...
> To: MD-List@yahoogroups.com
> Sent: Mon, 26 Mar 2007 8:25 AM
> Subject: [MD-List] Bi-Pap as ventilator
>
>
> Nathan (21) (with DMD) chose to reject a tracheaostomy years ago. 2
> years ago he began using the Bi-Pap during the day. He has been
using
> it 24/7 for almost 2 years now. Anyone else in this position?
> Laura in Indiana
>
>
>
>
______________________________________________________________________
__
> AOL now offers free email to everyone.  Find out more about what's
free from AOL at AOL.com.
>

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#19686

From: Terri <momdmd@...>
Date: Mon Apr 2, 2007 4:59 am
Subject: RE: update, Alex!

imblueangel

Offline

Thank you.
Alex's birthday was Thursday March 29 and he is 16.
Terri

To: MD-List@yahoogroups.com
From: SKumbera@...
Date: Sat, 31 Mar 2007 11:29:05 -0400
Subject: Re: [MD-List] update, Alex!

Hello Terri and Alex,
You are in our thoughts and prayer. May god be with you at this most
difficult time. How old is Alex?
Sue mom of Jon age 21 DMD

-----Original Message-----
From: momdmd@hotmail.com
To: dmdsupport@yahoogroups.com; mdaalltheway@yahoogroups.com;
dmdpioneers@yahoogroups.com; md-list@yahoogroups.com;
npventsupport@yahoogroups.com
Sent: Thu, 29 Mar 2007 10:57 PM
Subject: [MD-List] update, Alex!

I wanted to thank-all of you on your support especially with Alex. I
just wanted to let you know that test results from the complete blood
workup done on Alex tuesday, show that he is at critical levels, a
couple of his meds have been discontinued due to critical highs
(digoxin and potassium) and the doctors say that he only has 2 or 3
days to live. I grateful that he made it to his 16 birthday but so
broken hearted as I watch my son die before my eyes and there isn't
anything we can do this time but make him comfortable. I am grateful
that I had a year and a half I wasn't going to have but so sad, I don't
want to lose my child. I pray for a miracle but I know this time he may
not survive. I want to thank you all for your continued support.
Terri

--------
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#19685

From: Vikki Stefans <vstefans@...>
Date: Sun Apr 1, 2007 3:34 pm
Subject: Re: update, Alex!

vstefans

Offline

Terri, I'm so sorry - you should have had longer with Alex, the bad
cardiomyopathy when it happens is a real tragedy for us and our young
ones...I wish there was a medication to fix it, or just anything more that
could be done. We are dealing with some major issues and heartaches with
my parents right now too, but I will save a piece of my heart to go out to
you, and I so wish there was more that just condoleneces and prayers to
send your way. hugs,

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Thu, 29 Mar 2007, Terri wrote:

> I wanted to thank-all of you on your support especially with Alex. I
> just wanted to let you know that test results from the complete blood
> workup done on Alex tuesday, show that he is at critical levels, a
> couple of his meds have been discontinued due to critical highs (digoxin
> and potassium) and the doctors say that he only has 2 or 3 days to live.
> I grateful that he made it to his 16 birthday but so broken hearted as I
> watch my son die before my eyes and there isn't anything we can do this
> time but make him comfortable. I am grateful that I had a year and a
> half I wasn't going to have but so sad, I don't want to lose my child. I
> pray for a miracle but I know this time he may not survive. I want to
> thank you all for your continued support.