Fwd: Dakota Bihn a neighbor in need

[Guest guest]

This isn't about autism - it's about Tay-Sachs Disease - which is 100% fatal and is afflicting a little girl in Olmsted Falls - Dakota Bihn. Dakota was featured in a PD article a little while back for pursuing a controversial cord blood transplant at Duke University. Dakota still has Tay-Sachs and continues her fight.

If you have 5 minutes, please read this note from her parents and view the video on the linked website.

Thanks for your time.

Margie

______________________________________________________________

Dear Friends,

As many of you know our beautiful little girl Dakota continues to battle

Tay-Sachs disease.    We have created a video to introduce the world to our

very strong little girl.    Dakota is now 8 years old and was diagnosed with

Tay-Sachs disease just over two years ago.  Tay-Sachs is a genetic disease

that has no treatment or cure, and is ALWAYS fatal in children.  Dakota

risked her life nearly two years ago when she went through a very painful

and complex cord blood transplant where all her blood was replaced with new

blood, with the hope of eliminating the disease.  The transplant may have

helped, but the disease is still there.  Dakota has been nicknamed the "Hope

Child" by other Tay-Sachs parents because of her courageous battle to beat

this horrible disease.    But the clock is still ticking....

We have medical specialists all over the world that we are in constant

communication with that have assured us that the cure is within reach!   The

challenge is the funding necessary to convert theory into clinical

application.   We have become involved with the Tay-Sachs Gene Therapy

Consortium that has created an international team of experts dedicated to

converting hopeful animal models into useful human clinical trials.   We

have no choice but to take matters into our own hands and raise the monies

needed to potentially save the life of our daughter and her many terminally

ill friends around the world. We need to find a cure for this disease so

future generations of children like Dakota and families like ours don't have

to endure this agony.

With the help of our family and friends, we have started a fund raising

campaign called "Dakota's Dream," designed to raise money for the Cure

Tay-Sachs Foundation (which is a 501©(3) tax exempt foundation).  We are

declaring November "Dakota's Dream" month, where corporations, schools and

churches from all over are collecting money on our behalf.  On Saturday,

November 24 we are organizing children of all ages to collect money in their

neighborhoods to support Dakota's Dream.  We hope to have 1,000 kids each

collect $100 on this day.  Hopefully we will surpass that number of kids

helping other kids.

Please take 5 minutes of your valuable time to watch the DVD that was made

to give you a small understanding of the magnitude of the situation.  Yes,

we need money.  But more importantly we need to educate people about

Tay-Sachs disease.  After you view the video, please feel free to pass this

e-mail along to anyone and everyone you know.  The disease is found in every

part of the world, among all races, religions and genders.  This is one

disease that we CAN and WILL find a cure for in the next few years - but

only with your help.

Thank you for taking the time to listen. Please watch the video and visit

our web site for further information about Tay-Sachs disease and how you can

be a part of Dakota's Dream on November 24, 2007.   Thank you and God bless.

Link to Dakota's Dream video:   <http://www.curetay-sachs.org/dream.shtml>

http://www.curetay-sachs.org/dream.shtml

Link to Cure Tay-Sachs Foundation web site:  <http://curetay-sachs.org/>

http://CureTay-Sachs.org

Ken and Bihn

Olmsted Falls, Ohio

Bihn

www.caringbridge.org/visit/dakotabihn

www.curetay-sachs.org

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[Guest guest]

Suzanne --

Thanks for your note. I was a little nervous posting that letter re: Dakota -- but I figured all of us could understand and feel for this family and their plight. We are all in a fight - a fight to cure autism, but autism is not (usually) fatal. Tay-Sachs is - always. And like you said -- the more we find out about all diseases, particularly neurological ones, the closer we come to finding cures for the others, including autism. So, I felt there was a connection and that is why I forwarded it. I also was very, VERY moved by the video and it really helped put my problems into perspective.

I am so sorry to hear of the problems that you are having with your son and I pray that the doctors are soon able to find out what is causing all of his severe problems and are able to solve them.

Thanks again for your very supportive letter!

Margie

************************************** See what's new at http://www.aol.com

[Guest guest]

Margie!

God bless you!!!! Dakota is a relative of mine through marriage!

Oh, thank you for putting Ken and 's letter up. I also would

like to add that my sister-in-law will be holding a fundraiser for

Dakota's Dream on Saturday, Nov. 3rd -- if you're a scrapbooker or a

paper crafter, please consider coming! If you want more details on

it, please feel welcome to contact me off-list.

If I may make a personal plea here...curing Tay-Sachs wouldn't just

benefit a small number of people. There are over 70 diseases similar

to it that would be helped or cured if we could discover a cure for

this one. Do you know anyone with Parkinson's? How about

Alzheimer's? Some of these diseases have much in common with the way

Tay-Sachs works. Finding a cure for it could help find a cure for

these others. My family is in the middle of our own mighty struggle

here...that's why you all haven't heard from or seen me in awhile.

My youngest son has severe Autism, but suddenly, began regressing

instead of progressing. Then came intractable seizures, tremors,

stiff gait, regression of more and more skills, tachycardia,

hyperventilation, and other major problems....we were referred to a

geneticist. My son is being tested for a mitochondrial disorder.

While not typically co-morbid with Autism, there are more and more

cases being identified that have some correlation to Autism. The

severity of mito disorders range from mild to fatal. Yes....you read

that correctly...FATAL. I also learned that I may have a

mitochondrial disorder. Other members of my family may have it as

well. My other children will likely have to be tested to see if or

how they are affected.

You think it can never happen to you...it's a one in a million

shot...until you become that one in a million.

The work being done on finding a cure for Tay-Sachs could also help

mitochondrial disorders, because of they way they work. They all

have to do with a faulty -- but essential -- systems in the body's

cells. If we can figure out a cure for one, that opens the door to

cures for so many others...including my son.

Please, I beg you all...go to the website...watch the video. And

please...PLEASE, consider helping in some way. I know we all have a

lot to do with our own situations. But by helping someone else, you

may end up helping yourself in the process...or someone you love.

Thanks, everyone. And thank you, Margie!

Sincerely,

Suzanne

>

> This isn't about autism - it's about Tay-Sachs Disease - which is

100% fatal

> and is afflicting a little girl in Olmsted Falls - Dakota Bihn.

Dakota was

> featured in a PD article a little while back for pursuing a

controversial cord

> blood transplant at Duke University. Dakota still has Tay-Sachs

and

> continues her fight.

>

> If you have 5 minutes, please read this note from her parents and

view the

> video on the linked website.

>

> Thanks for your time.

> Margie

>

> ______________________________________________________________

>

> Dear Friends,

>

>

>

> As many of you know our beautiful little girl Dakota continues to

battle

> Tay-Sachs disease.    We have created a video to introduce the

world to our

> very strong little girl.    Dakota is now 8 years old and was

diagnosed with

> Tay-Sachs disease just over two years ago.  Tay-Sachs is a genetic

disease

> that has no treatment or cure, and is ALWAYS fatal in children. 

Dakota

> risked her life nearly two years ago when she went through a very

painful

> and complex cord blood transplant where all her blood was replaced

with new

> blood, with the hope of eliminating the disease.  The transplant

may have

> helped, but the disease is still there.  Dakota has been nicknamed

the " Hope

> Child " by other Tay-Sachs parents because of her courageous battle

to beat

> this horrible disease.    But the clock is still ticking....

>

>

>

> We have medical specialists all over the world that we are in

constant

> communication with that have assured us that the cure is within

reach!   The

> challenge is the funding necessary to convert theory into clinical

> application.   We have become involved with the Tay-Sachs Gene

Therapy

> Consortium that has created an international team of experts

dedicated to

> converting hopeful animal models into useful human clinical

trials.   We

> have no choice but to take matters into our own hands and raise the

monies

> needed to potentially save the life of our daughter and her many

terminally

> ill friends around the world. We need to find a cure for this

disease so

> future generations of children like Dakota and families like ours

don't have

> to endure this agony.

>

>

>

> With the help of our family and friends, we have started a fund

raising

> campaign called " Dakota's Dream, " designed to raise money for the

Cure

> Tay-Sachs Foundation (which is a 501©(3) tax exempt foundation). 

We are

> declaring November " Dakota's Dream " month, where corporations,

schools and

> churches from all over are collecting money on our behalf.  On

Saturday,

> November 24 we are organizing children of all ages to collect money

in their

> neighborhoods to support Dakota's Dream.  We hope to have 1,000

kids each

> collect $100 on this day.  Hopefully we will surpass that number of

kids

> helping other kids.

>

>

>

> Please take 5 minutes of your valuable time to watch the DVD that

was made

> to give you a small understanding of the magnitude of the

situation.  Yes,

> we need money.  But more importantly we need to educate people about

> Tay-Sachs disease.  After you view the video, please feel free to

pass this

> e-mail along to anyone and everyone you know.  The disease is found

in every

> part of the world, among all races, religions and genders.  This is

one

> disease that we CAN and WILL find a cure for in the next few years -

but

> only with your help.

>

>

>

> Thank you for taking the time to listen. Please watch the video and

visit

> our web site for further information about Tay-Sachs disease and

how you can

> be a part of Dakota's Dream on November 24, 2007.   Thank you and

God bless.

>

>

>

> Link to Dakota's Dream video:   <http://www.curetay-

sachs.org/dream.shtml>

> http://www.curetay-sachs.org/dream.shtml

>

>

>

> Link to Cure Tay-Sachs Foundation web site:  <http://curetay-

sachs.org/>

> http://CureTay-Sachs.org

>

>

>

> Ken and Bihn

>

> Olmsted Falls, Ohio

>

>

>

> Bihn

>

> www.caringbridge.org/visit/dakotabihn

>

> www.curetay-sachs.org

>

>

>

>

>

> **************************************

> See what's new at http://www.aol.com

>