sad news

October 22, 2008

I just heard the details. Taya took a pill to prevent Malaria last night, and it

had got stuck in her throat. She said it was okay, since it had happened before

and she could still act normally. Sometime during the night she had woken up her

husband, since she couldn't breath. Mucus had built up in her lungs. They

couldn't get enough help on time, since they were in a small town in Africa, and

she passed away.

She had had some swallowing trouble earlier, and she had started to have

difficulties with continous coughing.

- Venla

Sad news

I've been mostly lurking on this list, but I'm the sister of Taya Heinonen.

I'm sad to inform you she passed away last night while on a work-related trip in

Tanzania. I don't have all the details yet, so I'll send another message when I

know more.

- Venla

SMA II

October 22, 2008

I'm so sorry Venla...our thoughts are with you.

tracy

In a message dated 10/22/2008 10:31:25 A.M. Central Daylight Time,

blueyedaze@... writes:

I'm so sorry for your loss. That's just too sad.

-Amy

On Oct 22, 2008, at 3:04 AM, Venla RÃ¤ty wrote:

> I've been mostly lurking on this list, but I'm the sister of Taya

> Heinonen. I'm sad to inform you she passed away last night while on

> a work-related trip in Tanzania. I don't have all the details yet,

> so I'll send another message when I know more.

>

> - Venla

> SMA II

>

> [Non-text portions of this message have been removed]

>

[Non-text portions of this message have been removed]

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics â€“ check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

October 22, 2008

I really am sad to hear it. My heartfelt sympathy to you and all her

loved ones.

Camilla

>

> I've been mostly lurking on this list, but I'm the sister of Taya

Heinonen. I'm sad to inform you she passed away last night while on a

work-related trip in Tanzania. I don't have all the details yet, so

I'll send another message when I know more.

>

> - Venla

> SMA II

>

October 22, 2008

That is terrible news, I am very sorry for your loss.

Tom

--------- Sad news

I've been mostly lurking on this list, but I'm the sister of Taya Heinonen. I'm

sad to inform you she passed away last night while on a work-related trip in

Tanzania. I don't have all the details yet, so I'll send another message when I

know more.

- Venla

SMA II

October 22, 2008

Dear Venla,

I’m so sorry for your loss. I am a lurker too, but I had had a few email

conversations with Taya over the years. She was always so positive and she will

be missed by so many people. My condolences to you, her husband and to all her

family and friends. My thoughts are with you.

x

-----------------------------------------

Email sent from www.virginmedia.com/email

Virus-checked using McAfee® Software and scanned for spam

October 22, 2008

I'm so sorry for your loss. That's just too sad.

-Amy

On Oct 22, 2008, at 3:04 AM, Venla Räty wrote:

> I've been mostly lurking on this list, but I'm the sister of Taya

> Heinonen. I'm sad to inform you she passed away last night while on

> a work-related trip in Tanzania. I don't have all the details yet,

> so I'll send another message when I know more.

>

> - Venla

> SMA II

>

October 22, 2008

this so awfull! i'm sorry for your loss and be strong

love & light

Patie

http://patie80.multiply.com

http://lilithfromearth.livejournal.com

http://patie.tripod.com

October 22, 2008

Venla,

Oh my, this is so unexpected! I'm so sorry to hear of her passing. She was

such a bright and caring person, and she never hesitated to chime in here to

help another SMAer. You, your family, and her friends are in my thoughts

and prayers.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" When you're gone, the pieces of my heart are missing you. When you're

gone, the face I used to know is missing too. When you're gone all the words I

need to hear to always get me thru the day and make it ok. I miss you. "

-Avril Lavigne

In a message dated 10/22/2008 3:07:35 A.M. Eastern Daylight Time,

wepsi@... writes:

I've been mostly lurking on this list, but I'm the sister of Taya Heinonen.

I'm sad to inform you she passed away last night while on a work-related trip

in Tanzania. I don't have all the details yet, so I'll send another message

when I know more.

- Venla

SMA II

[Non-text portions of this message have been removed]

**************Play online games for FREE at Games.com! All of your favorites,

no registration required and great graphics â€“ check it out!

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

http://www.games.com?ncid=emlcntusgame00000001)

October 22, 2008

Oh, my, that is so sad. I've known Taya for over a decade! Please

let her husband know I am thinking of him and the family.

On Oct 22, 2008, at 3:04 AM, Venla Räty wrote:

> I've been mostly lurking on this list, but I'm the sister of Taya

> Heinonen. I'm sad to inform you she passed away last night while on

> a work-related trip in Tanzania. I don't have all the details yet,

> so I'll send another message when I know more.

>

> - Venla

> SMA II

>

October 22, 2008

I will. He's in Tanzania until Sunday or so, but they'll bring Taya home before

that. Her wheelchair and the clothes she had with her will be donated to someone

in there, as she likely would have wanted.

Re: Sad news

Oh, my, that is so sad. I've known Taya for over a decade! Please

let her husband know I am thinking of him and the family.

On Oct 22, 2008, at 3:04 AM, Venla Räty wrote:

> I've been mostly lurking on this list, but I'm the sister of Taya

> Heinonen. I'm sad to inform you she passed away last night while on

> a work-related trip in Tanzania. I don't have all the details yet,

> so I'll send another message when I know more.

>

> - Venla

> SMA II

>

October 22, 2008

Thank you for letting us know, Venla. I really felt an affinity with

Taya...the work she did, her politics, her world view from the

perspective of having a disability while not being ruled by her

disability. Sending you and all who love her warm thoughts and an

acknowledgment that the world is a better place for her being here.

Alana

SMA II, Age 42

Berkeley, CA, USA

>

> I will. He's in Tanzania until Sunday or so, but they'll bring Taya

home before that. Her wheelchair and the clothes she had with her will

be donated to someone in there, as she likely would have wanted.

>

October 22, 2008

Venla, if you feel up to it, I'd love to hear about what Taya was doing

in Tanzania. I have a friend who just returned from there doing public

health work regarding birth. It was a powerful experience.

October 22, 2008

I will sure miss Taya, she was always there to give advice and talk. Thank

you for informing us. :-(

On 10/22/08 2:04 AM, " Venla Räty " <wepsi@...> wrote:

> I've been mostly lurking on this list, but I'm the sister of Taya Heinonen.

> I'm sad to inform you she passed away last night while on a work-related trip

> in Tanzania. I don't have all the details yet, so I'll send another message

> when I know more.

>

> - Venla

> SMA II

>

October 22, 2008

I'm also very sorry to hear about Taya's passing. I am constantly amazed

at the way SMA adults don't just sit around, but work to make a better

world (yes, the pun was intended.) I hope Bernie will grow up to be that

kind of person too.

It would be very interesting to hear more about the project she was

working on. I hope someone will carry on her work there.

bettylou

October 23, 2008

It's shocking. I'm very sad. My deepest condolences to her family and friends.

Aul

________________________________

From: " " < >

Sent: Wednesday, October 22, 2008 7:41:56 PM

Subject: Digest Number 2759

There are 17 messages in this issue.

Topics in this digest:

1.1. Sad news

From: Venla Räty

1.2. Re: Sad news

From: Tania

1.3. Re: Sad news

From: Venla Räty

1.4. Re: Sad news

From: Camilla

1.5. Re: Sad news

From: tshindle@...

1.6. Re : Re: Sad news

From: Nisar Elahi

1.7. Re : Re: Sad news

From: Nisar Elahi

1.8. Re: Sad news

From: Amy

1.9. Re: Sad news

From: tstefonek@...

1.10. Re: Sad news

From: patrycja polczyk

1.11. Re: Sad news

From: Malatesta

1.12. Re: Sad news

From: Venla Räty

1.13. Re: Sad news

From: Alana

1.14. Re: Sad news

From: Alana

1.15. Re: Sad news

From: Ksmile96@...

1.16. Re: Sad news

From:

2. Re: sad news

From: mulberries@...

Messages

________________________________________________________________________

1.1. Sad news

Posted by: " Venla Räty " wepsi@... wepsi_98

Date: Wed Oct 22, 2008 12:04 am ((PDT))

I've been mostly lurking on this list, but I'm the sister of Taya Heinonen. I'm

sad to inform you she passed away last night while on a work-related trip in

Tanzania. I don't have all the details yet, so I'll send another message when I

know more.

- Venla

SMA II

October 24, 2008

Please know my heartfelt condolences and send them to all who loved and

knew Taya.

My brother Hank {my brother who had SMA} died the same way.

In the 1980s I choked on and then aspirated a huge pill myself and was

only kept alive by care givers who pumped 'speed' into me for days {by

back then legally available channals that aren't available now} while

chest P.T.ing and holding me upside down, until I was better.

Aspiration is a horrible but common risks that individuals with SMA

face regularilly.

> 1.3. Re: Sad news

> Posted by: " Venla Räty " wepsi@... wepsi_98

> Date: Wed Oct 22, 2008 1:43 am ((PDT))

>

> I just heard the details. Taya took a pill to prevent Malaria last

night, and it had got stuck in her throat. She said it was okay, since

it had happened before and she could still act normally. Sometime

during the night she had woken up her husband, since she couldn't

breath. Mucus had built up in her lungs. They couldn't get enough help

on time, since they were in a small town in Africa, and she passed

away.

> She had had some swallowing trouble earlier, and she had started to

have difficulties with continous coughing.

>

> - Venla

>

October 24, 2008

Does that mean that the whole pill actually went into your lungs (or taya¹s

or your brother¹s)? I choke a lot but so far have never had anything like

aspiration pneumonia etc. I usually choke on water though and would never

attempt to swallow a pill.

On 10/24/08 9:37 PM, " Amy " <charmedcripchic@...> wrote:

> Please know my heartfelt condolences and send them to all who loved and

> knew Taya.

>

> My brother Hank {my brother who had SMA} died the same way.

>

> In the 1980s I choked on and then aspirated a huge pill myself and was

> only kept alive by care givers who pumped 'speed' into me for days {by

> back then legally available channals that aren't available now} while

> chest P.T.ing and holding me upside down, until I was better.

>

> Aspiration is a horrible but common risks that individuals with SMA

> face regularilly.

>

>> > 1.3. Re: Sad news

>> > Posted by: " Venla Räty " wepsi@... wepsi_98

>> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

>> >

>> > I just heard the details. Taya took a pill to prevent Malaria last

> night, and it had got stuck in her throat. She said it was okay, since

> it had happened before and she could still act normally. Sometime

> during the night she had woken up her husband, since she couldn't

> breath. Mucus had built up in her lungs. They couldn't get enough help

> on time, since they were in a small town in Africa, and she passed

> away.

>> > She had had some swallowing trouble earlier, and she had started to

> have difficulties with continous coughing.

>> >

>> > - Venla

>> >

>

October 25, 2008

venlamy thoughts are with you and all those who loved you sister. i highly

valued taya as a fellow european on this list, always willing to help, and

so so admired her adventuring spirit.

linda

2008/10/25 <nicoleroberts@...>

> Does that mean that the whole pill actually went into your lungs (or

> taya¹s

> or your brother¹s)? I choke a lot but so far have never had anything like

> aspiration pneumonia etc. I usually choke on water though and would never

> attempt to swallow a pill.

>

> On 10/24/08 9:37 PM, " Amy "

<charmedcripchic@...<charmedcripchic%40>>

> wrote:

>

> > Please know my heartfelt condolences and send them to all who loved and

> > knew Taya.

> >

> > My brother Hank {my brother who had SMA} died the same way.

> >

> > In the 1980s I choked on and then aspirated a huge pill myself and was

> > only kept alive by care givers who pumped 'speed' into me for days {by

> > back then legally available channals that aren't available now} while

> > chest P.T.ing and holding me upside down, until I was better.

> >

> > Aspiration is a horrible but common risks that individuals with SMA

> > face regularilly.

> >

> >> > 1.3. Re: Sad news

> >> > Posted by: " Venla Räty " wepsi@... wepsi_98

> >> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

> >> >

> >> > I just heard the details. Taya took a pill to prevent Malaria last

> > night, and it had got stuck in her throat. She said it was okay, since

> > it had happened before and she could still act normally. Sometime

> > during the night she had woken up her husband, since she couldn't

> > breath. Mucus had built up in her lungs. They couldn't get enough help

> > on time, since they were in a small town in Africa, and she passed

> > away.

> >> > She had had some swallowing trouble earlier, and she had started to

> > have difficulties with continous coughing.

> >> >

> >> > - Venla

> >> >

> >

>

October 25, 2008

I can't speak for Taya but with me a pill went right down my right

bronchial tube and burned there as it disolved because it was a high

octane prescription anti inflamatory med.

This happened because the cripplearium I was in refused to crush

pills or give liquid meds because " only whimps take baby medicine at

16 " . The staff claimed my swallowing problems were just me trying to

get special treatment. So I tried to swallow a huge oblong hard

tablet {bigger then a centrum vitamin} and when it choked me I gasped

and down into the lung it went. {ouch}

My brother Hank was force fed a raw egg by our mother {she thought it

would make him gain weight} while he was lying on his back, Hank

gagged on the egg and then inhaled into his lung while my mom poured

it into him as he choked.

>

> > Please know my heartfelt condolences and send them to all who

loved and

> > knew Taya.

> >

> > My brother Hank {my brother who had SMA} died the same way.

> >

> > In the 1980s I choked on and then aspirated a huge pill myself

and was

> > only kept alive by care givers who pumped 'speed' into me for

days {by

> > back then legally available channals that aren't available now}

while

> > chest P.T.ing and holding me upside down, until I was better.

> >

> > Aspiration is a horrible but common risks that individuals with

SMA

> > face regularilly.

> >

> >> > 1.3. Re: Sad news

> >> > Posted by: " Venla Räty " wepsi@ wepsi_98

> >> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

> >> >

> >> > I just heard the details. Taya took a pill to prevent Malaria

last

> > night, and it had got stuck in her throat. She said it was okay,

since

> > it had happened before and she could still act normally. Sometime

> > during the night she had woken up her husband, since she couldn't

> > breath. Mucus had built up in her lungs. They couldn't get enough

help

> > on time, since they were in a small town in Africa, and she passed

> > away.

> >> > She had had some swallowing trouble earlier, and she had

started to

> > have difficulties with continous coughing.

> >> >

> >> > - Venla

> >> >

> >

>

October 25, 2008

I am so sorry to hear this news. My thoughts and prayers go out to

your family.

October 25, 2008

Choking and aspirating is one of my biggest fears and pretty common among us. I

crush

all my pills or ask if it's possible to have the pharmacy to make my meds in a

liquid

suspension. Medicaid sometimes doesn't cover this, but it's worth it in my

opinion.

One time I had an allergic reaction to a blood pressure med and I immediately

started

coughing, aspirating saliva. I went to the ER and they gave me benadryl via IV

and I

eventually cleared my lungs after being on the Bi-Pap and using percussions.

These

things can occur at any moment which can really freak me out, but I can't be so

scared

about every little thing...it's a balancing act.

Alice

> >

> > > Please know my heartfelt condolences and send them to all who loved and

> > > knew Taya.

> > >

> > > My brother Hank {my brother who had SMA} died the same way.

> > >

> > > In the 1980s I choked on and then aspirated a huge pill myself and was

> > > only kept alive by care givers who pumped 'speed' into me for days {by

> > > back then legally available channals that aren't available now} while

> > > chest P.T.ing and holding me upside down, until I was better.

> > >

> > > Aspiration is a horrible but common risks that individuals with SMA

> > > face regularilly.

> > >

> > >> > 1.3. Re: Sad news

> > >> > Posted by: " Venla Räty " wepsi@ wepsi_98

> > >> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

> > >> >

> > >> > I just heard the details. Taya took a pill to prevent Malaria last

> > > night, and it had got stuck in her throat. She said it was okay, since

> > > it had happened before and she could still act normally. Sometime

> > > during the night she had woken up her husband, since she couldn't

> > > breath. Mucus had built up in her lungs. They couldn't get enough help

> > > on time, since they were in a small town in Africa, and she passed

> > > away.

> > >> > She had had some swallowing trouble earlier, and she had started to

> > > have difficulties with continous coughing.

> > >> >

> > >> > - Venla

> > >> >

> > >

> >

October 26, 2008

I'm sorry to hear how your brother choked. How old was he?

All this talk about choking and the great loss of our dear Taya has made me very

cautious when I am swallowing. I'm still not completely well from my lung

infection so I'm being very careful about things. Last week I had a scare while

while suctioning my trach. I can still suction by myself after helps me

with positioning. I put the catheter down my trach and put my thumb on the

valve but I couldn't pull my thumb off it once it was deep in my left lung.

had turned away for two seconds. Blood started filling the tubing and my

heart was racing. I reached down with my right hand and released my thumb and I

was able to pull the cath out of my lung. Surprisingly, I don't cause too much

internal damage (that I know of) and the next couple of suctions had only a

little blood in it. We turned down the suctioning pressure on my machine and I

am being very careful. Blah!

________________________________

From: Amy <charmedcripchic@...>

Sent: Saturday, October 25, 2008 6:45:29 PM

Subject: Re: Sad news

I can't speak for Taya but with me a pill went right down my right

bronchial tube and burned there as it disolved because it was a high

octane prescription anti inflamatory med.

This happened because the cripplearium I was in refused to crush

pills or give liquid meds because " only whimps take baby medicine at

16 " . The staff claimed my swallowing problems were just me trying to

get special treatment. So I tried to swallow a huge oblong hard

tablet {bigger then a centrum vitamin} and when it choked me I gasped

and down into the lung it went. {ouch}

My brother Hank was force fed a raw egg by our mother {she thought it

would make him gain weight} while he was lying on his back, Hank

gagged on the egg and then inhaled into his lung while my mom poured

it into him as he choked.

>

> > Please know my heartfelt condolences and send them to all who

loved and

> > knew Taya.

> >

> > My brother Hank {my brother who had SMA} died the same way.

> >

> > In the 1980s I choked on and then aspirated a huge pill myself

and was

> > only kept alive by care givers who pumped 'speed' into me for

days {by

> > back then legally available channals that aren't available now}

while

> > chest P.T.ing and holding me upside down, until I was better.

> >

> > Aspiration is a horrible but common risks that individuals with

SMA

> > face regularilly.

> >

> >> > 1.3. Re: Sad news

> >> > Posted by: " Venla Räty " wepsi@ wepsi_98

> >> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

> >> >

> >> > I just heard the details. Taya took a pill to prevent Malaria

last

> > night, and it had got stuck in her throat. She said it was okay,

since

> > it had happened before and she could still act normally. Sometime

> > during the night she had woken up her husband, since she couldn't

> > breath. Mucus had built up in her lungs. They couldn't get enough

help

> > on time, since they were in a small town in Africa, and she passed

> > away.

> >> > She had had some swallowing trouble earlier, and she had

started to

> > have difficulties with continous coughing.

> >> >

> >> > - Venla

> >> >

> >

>

October 26, 2008

I don't have the official information on what happened, since we don't know the

official cause of death (Taya won't be in Finland until next Thursday). I do

know that Taya had had swallowing troubles before (I remember her once almost

choking on some rice), and that pills had got partially stuck in her throat.

This time it also got stuck, but she thought it would melt away during the

night. Our mother and me discussed this, and considered if this happened because

it was a drug to prevent malaria. That type of drugs are strong and have sent

people to hospital before because of the side-effect. So we theorised that the

pill partially melted and irritated Taya's lungs/digestive system and....

She knew the risks of travelling, malaria-drugs and taking pills. She made her

own choice.

Re: Sad news

I can't speak for Taya but with me a pill went right down my right

bronchial tube and burned there as it disolved because it was a high

octane prescription anti inflamatory med.

This happened because the cripplearium I was in refused to crush

pills or give liquid meds because " only whimps take baby medicine at

16 " . The staff claimed my swallowing problems were just me trying to

get special treatment. So I tried to swallow a huge oblong hard

tablet {bigger then a centrum vitamin} and when it choked me I gasped

and down into the lung it went. {ouch}

My brother Hank was force fed a raw egg by our mother {she thought it

would make him gain weight} while he was lying on his back, Hank

gagged on the egg and then inhaled into his lung while my mom poured

it into him as he choked.

>

> > Please know my heartfelt condolences and send them to all who

loved and

> > knew Taya.

> >

> > My brother Hank {my brother who had SMA} died the same way.

> >

> > In the 1980s I choked on and then aspirated a huge pill myself

and was

> > only kept alive by care givers who pumped 'speed' into me for

days {by

> > back then legally available channals that aren't available now}

while

> > chest P.T.ing and holding me upside down, until I was better.

> >

> > Aspiration is a horrible but common risks that individuals with

SMA

> > face regularilly.

> >

> >> > 1.3. Re: Sad news

> >> > Posted by: " Venla Räty " wepsi@ wepsi_98

> >> > Date: Wed Oct 22, 2008 1:43 am ((PDT))

> >> >

> >> > I just heard the details. Taya took a pill to prevent Malaria

last

> > night, and it had got stuck in her throat. She said it was okay,

since

> > it had happened before and she could still act normally. Sometime

> > during the night she had woken up her husband, since she couldn't

> > breath. Mucus had built up in her lungs. They couldn't get enough

help

> > on time, since they were in a small town in Africa, and she passed

> > away.

> >> > She had had some swallowing trouble earlier, and she had

started to

> > have difficulties with continous coughing.

> >> >

> >> > - Venla

> >> >

> >

>

October 26, 2008

Taya worked for the Abilis-foundation (www.abilis.fi). They fund projects which

help disabled people in third world countries. The idea is to find work for the

disabled, so they can support themselves. There are several project-descriptions

on their website, as well as pictures of Taya. One project I remember included

buying a cow for a woman, so she could sell the milk. Other one was funding for

a wheelchair-repair shop in Zambia.

There are others working for the same foundation, so her work will be continued.

The foundation just prefers hiring disabled people or their close relatives, so

finding someone as capable as Taya will be difficult.

Re: Sad news

I'm also very sorry to hear about Taya's passing. I am constantly amazed

at the way SMA adults don't just sit around, but work to make a better

world (yes, the pun was intended.) I hope Bernie will grow up to be that

kind of person too.

It would be very interesting to hear more about the project she was

working on. I hope someone will carry on her work there.

bettylou

October 26, 2008

Please accept my sincere condolences to you and the rest of Taya's family on her

sudden loss. Taya was very dear to us and we will miss her very much.

Lori

________________________________

From: Venla Räty <wepsi@...>

Sent: Sunday, October 26, 2008 12:05:41 PM

Subject: Re: Re: Sad news