Re: Organ donations/ BEWARE

[Guest guest]

There are many organs that SMA dosen't disqualify you from donating.

{ie platelettes, eyes, skin, bone marrow, etc.} but after a certain

age nobody's {abled bodied or not} organs are wanted for transplants.

Any body part however can be studied at any age so do your homework

and think it over. Most importantly speak with your loved ones

because it can really traumatize some family members to deal with

what to decide during mourning of the huge loss of a loved one.

A problem that happened with my brother's passing and many other

families are when teaching hospitals literally take everything out of

deceased loved ones' remains after telling parents they " just needed

the spinal column sheath' and a muscle biopsy " no bigger than a

finger tip " during the conscent process.

When my sister died the doctors asked for her spinal collumn in the

same sentance of calling to say my sister had died. After years of

these insensitive doctors prodding, spraining, photographing her

naked at 13, doing the group leering at her in clinic {before patient

rights laws put a stop to public stripping teen aged patients for

groups of students}, botching blood gases, spinal fusions from hell,

infected foleys, bruising I.V.s, and intubating her false teeth into

her throat, the answer to these doctors was a unanimous- " NO! You've

done more than enough mutilation to her body when she was alive

you're not getting a chance at it now that she's dead! " {my exact

words by the way}

We weren't the only families from Boston Childrens Hospital with

hollowed out loved ones.

News papers around here reported of even the testicles of infant boys

who died of SIDs being taken as " needed for research for this

condition " by Boston Chilrens Hospital.

The family sued after finding out by accident when the funeral

director was sent a boys testicles in an envelope a year after his

burial and after the hospital was finished disecting the organs for

teaching purposes.

The hospital had serious fines and state investigations done that

almost took away their creditation.

There are many cases in the US and the UK like this.

I was told by one medical person that if you want to donate your body

or organs to prepare your loved ones to have a closed casket funeral

or cremation ceremony because they don't stop at taking just one

thing after the consent form is signed.

I'm all for those who wish to donate themselves to science but

hospitals can get greedy and deceptive to surviving families. To many

med students don't give families fair disclosure or ask for conscent

without being sneaky.

If anybody thinks I'm making this up google search it for yourself.

I'm not against donation as long as everyone is on the same page of

informed conscet and fair disclosure and practice.

>

> > Does anybody know about organ donations? I always assumed that

our

> > organs

> > wouldn't be accepted because we have SMA. Does anybody know if

this is

> > true?

> >

> > Kemp

> >

> > Director, OurGV Rewards

> >

> > http://www.ourgvrewards.com <http://www.ourgvrewards.com/>

> >

> > Phone: 714-974-5799

> >

> > Business Phone: 714-974-5693

> >

> > Cell Phone: 714-244-5920

> >

> > Phone: 949-579-9465

> >

> > Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

> >

> > Email 2: dkemp@... <dkemp%40ourgvrewards.com>

> >

> > <http://www.ourgvmall.com/djk> banner021.jpg

> >

> > <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?

toolbarId=1500

> > >

> > 000-toolbar-banner-1

> >

> >

[Guest guest]

Thanks. I really would want to donate my organs if it would help somebody,

but not for science. I think I've changed my mind now.

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Amy

Sent: Saturday, December 06, 2008 6:28 PM

Subject: Re: Organ donations/ BEWARE

There are many organs that SMA dosen't disqualify you from donating.

{ie platelettes, eyes, skin, bone marrow, etc.} but after a certain

age nobody's {abled bodied or not} organs are wanted for transplants.

Any body part however can be studied at any age so do your homework

and think it over. Most importantly speak with your loved ones

because it can really traumatize some family members to deal with

what to decide during mourning of the huge loss of a loved one.

A problem that happened with my brother's passing and many other

families are when teaching hospitals literally take everything out of

deceased loved ones' remains after telling parents they " just needed

the spinal column sheath' and a muscle biopsy " no bigger than a

finger tip " during the conscent process.

When my sister died the doctors asked for her spinal collumn in the

same sentance of calling to say my sister had died. After years of

these insensitive doctors prodding, spraining, photographing her

naked at 13, doing the group leering at her in clinic {before patient

rights laws put a stop to public stripping teen aged patients for

groups of students}, botching blood gases, spinal fusions from hell,

infected foleys, bruising I.V.s, and intubating her false teeth into

her throat, the answer to these doctors was a unanimous- " NO! You've

done more than enough mutilation to her body when she was alive

you're not getting a chance at it now that she's dead! " {my exact

words by the way}

We weren't the only families from Boston Childrens Hospital with

hollowed out loved ones.

News papers around here reported of even the testicles of infant boys

who died of SIDs being taken as " needed for research for this

condition " by Boston Chilrens Hospital.

The family sued after finding out by accident when the funeral

director was sent a boys testicles in an envelope a year after his

burial and after the hospital was finished disecting the organs for

teaching purposes.

The hospital had serious fines and state investigations done that

almost took away their creditation.

There are many cases in the US and the UK like this.

I was told by one medical person that if you want to donate your body

or organs to prepare your loved ones to have a closed casket funeral

or cremation ceremony because they don't stop at taking just one

thing after the consent form is signed.

I'm all for those who wish to donate themselves to science but

hospitals can get greedy and deceptive to surviving families. To many

med students don't give families fair disclosure or ask for conscent

without being sneaky.

If anybody thinks I'm making this up google search it for yourself.

I'm not against donation as long as everyone is on the same page of

informed conscet and fair disclosure and practice.

>

> > Does anybody know about organ donations? I always assumed that

our

> > organs

> > wouldn't be accepted because we have SMA. Does anybody know if

this is

> > true?

> >

> > Kemp

> >

> > Director, OurGV Rewards

> >

> > http://www.ourgvrewards.com <http://www.ourgvrewards.com/>

> >

> > Phone: 714-974-5799

> >

> > Business Phone: 714-974-5693

> >

> > Cell Phone: 714-244-5920

> >

> > Phone: 949-579-9465

> >

> > Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

> >

> > Email 2: dkemp@... <dkemp%40ourgvrewards.com>

> >

> > <http://www.ourgvmall.com/djk> banner021.jpg

> >

> > <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?

toolbarId=1500

> > >

> > 000-toolbar-banner-1

> >

> >

[Guest guest]

Doug,

I would like to suggest that you contact Dr. Swoboda directly and

see what she has to say. She is one of the most kind, caring SMA docs I have

EVER met. She and her team have made some huge strides towards the cure.

Talk to her about your wishes, and your concerns and just see what she has

to say. Anybody here on the chat who has met her can back up what I am

telling you. Your contributions could be part of the cure. She can be

reached at swoboda@....

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Mon, Dec 8, 2008 at 12:23 AM, <d-kemp@...> wrote:

> Thanks. I really would want to donate my organs if it would help

> somebody,

> but not for science. I think I've changed my mind now.

>

> Kemp

>

> Director, OurGV Rewards

>

> <http://www.ourgvrewards.com/> http://www.ourgvrewards.com

>

> Phone: 714-974-5799

>

> Business Phone: 714-974-5693

>

> Cell Phone: 714-244-5920

>

> Phone: 949-579-9465

>

> Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

>

> Email 2: dkemp@... <dkemp%40ourgvrewards.com>

>

> <http://www.ourgvmall.com/djk> banner021.jpg

>

> <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500

> >

> 000-toolbar-banner-1

>

> From: <%40> [mailto:

> <%40>] On

> Behalf Of Amy

> Sent: Saturday, December 06, 2008 6:28 PM

> <%40>

> Subject: Re: Organ donations/ BEWARE

>

> There are many organs that SMA dosen't disqualify you from donating.

> {ie platelettes, eyes, skin, bone marrow, etc.} but after a certain

> age nobody's {abled bodied or not} organs are wanted for transplants.

>

> Any body part however can be studied at any age so do your homework

> and think it over. Most importantly speak with your loved ones

> because it can really traumatize some family members to deal with

> what to decide during mourning of the huge loss of a loved one.

>

> A problem that happened with my brother's passing and many other

> families are when teaching hospitals literally take everything out of

> deceased loved ones' remains after telling parents they " just needed

> the spinal column sheath' and a muscle biopsy " no bigger than a

> finger tip " during the conscent process.

>

> When my sister died the doctors asked for her spinal collumn in the

> same sentance of calling to say my sister had died. After years of

> these insensitive doctors prodding, spraining, photographing her

> naked at 13, doing the group leering at her in clinic {before patient

> rights laws put a stop to public stripping teen aged patients for

> groups of students}, botching blood gases, spinal fusions from hell,

> infected foleys, bruising I.V.s, and intubating her false teeth into

> her throat, the answer to these doctors was a unanimous- " NO! You've

> done more than enough mutilation to her body when she was alive

> you're not getting a chance at it now that she's dead! " {my exact

> words by the way}

>

> We weren't the only families from Boston Childrens Hospital with

> hollowed out loved ones.

>

> News papers around here reported of even the testicles of infant boys

> who died of SIDs being taken as " needed for research for this

> condition " by Boston Chilrens Hospital.

>

> The family sued after finding out by accident when the funeral

> director was sent a boys testicles in an envelope a year after his

> burial and after the hospital was finished disecting the organs for

> teaching purposes.

>

> The hospital had serious fines and state investigations done that

> almost took away their creditation.

>

> There are many cases in the US and the UK like this.

>

> I was told by one medical person that if you want to donate your body

> or organs to prepare your loved ones to have a closed casket funeral

> or cremation ceremony because they don't stop at taking just one

> thing after the consent form is signed.

>

> I'm all for those who wish to donate themselves to science but

> hospitals can get greedy and deceptive to surviving families. To many

> med students don't give families fair disclosure or ask for conscent

> without being sneaky.

>

> If anybody thinks I'm making this up google search it for yourself.

>

> I'm not against donation as long as everyone is on the same page of

> informed conscet and fair disclosure and practice.

>

>

> >

> > > Does anybody know about organ donations? I always assumed that

> our

> > > organs

> > > wouldn't be accepted because we have SMA. Does anybody know if

> this is

> > > true?

> > >

> > > Kemp

> > >

> > > Director, OurGV Rewards

> > >

> > > http://www.ourgvrewards.com <http://www.ourgvrewards.com/>

> > >

> > > Phone: 714-974-5799

> > >

> > > Business Phone: 714-974-5693

> > >

> > > Cell Phone: 714-244-5920

> > >

> > > Phone: 949-579-9465

> > >

> > > Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

> > >

> > > Email 2: dkemp@... <dkemp%40ourgvrewards.com>

> > >

> > > <http://www.ourgvmall.com/djk> banner021.jpg

> > >

> > > <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?

> toolbarId=1500

> > > >

> > > 000-toolbar-banner-1

> > >

> > >

[Guest guest]

I want to make sure people know that I'm not against organ donation

or any good doctors who are sensitive and working hard to find a cure

for us.

The biggest thing here is to communicate often with loved ones so

when the momment arrives they'll know your wishes and won't agonize

what you might've wanted to do.

> >

> > > Does anybody know about organ donations? I always assumed

that

> our

> > > organs

> > > wouldn't be accepted because we have SMA. Does anybody know if

> this is

> > > true?

> > >

> > > Kemp

> > >

> > > Director, OurGV Rewards

> > >

> > > http://www.ourgvrewards.com <http://www.ourgvrewards.com/>

> > >

> > > Phone: 714-974-5799

> > >

> > > Business Phone: 714-974-5693

> > >

> > > Cell Phone: 714-244-5920

> > >

> > > Phone: 949-579-9465

> > >

> > > Email 1: d-kemp@ <d-kemp%40sbcglobal.net>

> > >

> > > Email 2: dkemp@ <dkemp%40ourgvrewards.com>

> > >

> > > <http://www.ourgvmall.com/djk> banner021.jpg

> > >

> > > <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?

> toolbarId=1500

> > > >

> > > 000-toolbar-banner-1

> > >

> > >