Re: A QUESTION TO EVERYONE FOR HELP

September 7, 2006

Wow ! You go girl! That is great that you were able to stand up in the

face of such criticism and disbelief. I am in the process of writing Ian's

story for and am more than willing to forward it on to you along with

pictures of his x-ray.

I think it will be a tough battle for you, but through perseverance it would be

great if you could bring this treatment to Australia!

Noelle (12-2-01)

Ian (8-15-04)

A QUESTION TO EVERYONE FOR HELP

Hello to everyone on the group. It is again from

Australia. (s mum) I have a question for you all and I need

your help.

As you know, received his first POP jacket two and a half

months ago.

In November, I am campainging with the aim of bringing the early

treatment process to Australia. (I have been studying everything

has been telling me to read!!!)

I have booked appointments with many orthos around Australia to

discuss the possibility of them taking this on board, to commence

training through an ETTP, so that our Aussie kids can finally have

access to a proven treatment. I am prepared to fund it for them. I

had a meeting with s ortho last Friday, who was a very rude

and arrogant man and refused to even look at s cast, but I

stood my ground and gave him so much evidence that the early

treatment process works (Including !) that three days later,

he called me at home to apologise for his demeanor and gave me some

advice on how to go about campaining.

I need to be able to present these orthos in Australia with real

stories from real people, so they can't tell me it doesn't work for

other kids (As s ortho did. He said it was a superior

treatment to bracing, but only in s case, and it doesn't work

for most kids) . Is anyone out there able to help me by way of a

testimonial??????? It doesn't have to be long, just a brief story on

the success from the early treatment process. If anyone wanted to

include photos, it would help the cause so so much. (Bert, thanks

for your testimonial and photos, I loved it)

I know I am new to the group, and I know no one knows me very well

yet, but I am determined and want what is best for these kids. My

little boy has a major heart condition (half a heart) and now a

major spinal deformity, which could have been averted had he of

received correct treatment. Spinal surgery on ANY child which could

have been avoided is a crime, but for my son, it isn't really even a

possibility because of his heart. It is so risky our cardiologist

doesn't think we should go down that route. This can't happen to

another child in Australia.

I hope you can help me. I am putting all the testimonials together

in a booklet complete with Dr Mehtas longitiudinal study and DVD.

If anyone would like to assist Australia in this cause, please

contact me at briangchef@...

Your testimonial would make such a difference to the kids of

Australia. Apparantly their are at least 20-30 of them currently not

being treated with the RIGHT treatment.

Take care everyone,

thanks

September 7, 2006

You know, I was going to post a similar type of message. couldn't be helped

by casting because she has congenital scoliosis. But that did not stop me from

hanging around here and learning all I could about the casting. I have " seen "

the results being on this list! Just look at www.infantilescoliosis.org and the

doctors can see them too! 's story is there as well - which i should

probably update.

If I can help from a parent's perspective of " it would not work for my child,

but I have seen it work on other children " let me know!

I am behind you 100%!!!

Shellie Grant <shelliegrant@...> wrote:

you are absolutely inspirational. My Moriah could not benefit from

casting (too late) and she also has heart complications. She is almost 10 now.

They wouldn't touch her here either with that kind of treatment. has

given us more education and direction than the medical community.

Gail

Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

Mom to , 11/28/98 - ADHD/ODD/SID

and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and

renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR

Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 &

04/20/06

Put a little 'TLC' into your scrapbook!

Independent TLC Scrapbooking Instructor

http:\\www.topline-creations.com\gail

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

Stay in the know. Pulse on the new .com. Check it out.

September 8, 2006

Oh thankyou so much . I know it is going to be really hard

and a long process, but I believe we will be able to bring the early

treatment process to Australia, and it won't just be me, it will be

a huge combined effort. So, thankyou, I would love you to forward

Ians story on to me. Would you like my email address again. I just

got an email from a journalist for channel seven news who is helping

me to get national exposure. We are going to discuss how and what

needs to be covered in the story after I get back from London. (I

can't come to America because of s heart condition.)

Once I show all the orthos all these testimonials, it will be

impossible for them to deny the early treatment process'

effectiveness.

Thankyou again. It is really going to make such a huge differnce!

Kindest regards,

>

> Wow ! You go girl! That is great that you were able to

stand up in the face of such criticism and disbelief. I am in the

process of writing Ian's story for and am more than willing

to forward it on to you along with pictures of his x-ray.

>

> I think it will be a tough battle for you, but through

perseverance it would be great if you could bring this treatment to

Australia!

>

> Noelle (12-2-01)

> Ian (8-15-04)

> A QUESTION TO EVERYONE FOR HELP

>

> Hello to everyone on the group. It is again from

> Australia. (s mum) I have a question for you all and I

need

> your help.

>

> As you know, received his first POP jacket two and a half

> months ago.

>

> In November, I am campainging with the aim of bringing the early

> treatment process to Australia. (I have been studying everything

> has been telling me to read!!!)

>

> I have booked appointments with many orthos around Australia to

> discuss the possibility of them taking this on board, to

commence

> training through an ETTP, so that our Aussie kids can finally

have

> access to a proven treatment. I am prepared to fund it for them.

I

> had a meeting with s ortho last Friday, who was a very

rude

> and arrogant man and refused to even look at s cast, but I

> stood my ground and gave him so much evidence that the early

> treatment process works (Including !) that three days

later,

> he called me at home to apologise for his demeanor and gave me

some

> advice on how to go about campaining.

>

> I need to be able to present these orthos in Australia with real

> stories from real people, so they can't tell me it doesn't work

for

> other kids (As s ortho did. He said it was a superior

> treatment to bracing, but only in s case, and it doesn't

work

> for most kids) . Is anyone out there able to help me by way of a

> testimonial??????? It doesn't have to be long, just a brief

story on

> the success from the early treatment process. If anyone wanted

to

> include photos, it would help the cause so so much. (Bert,

thanks

> for your testimonial and photos, I loved it)

>

> I know I am new to the group, and I know no one knows me very

well

> yet, but I am determined and want what is best for these kids.

My

> little boy has a major heart condition (half a heart) and now a

> major spinal deformity, which could have been averted had he of

> received correct treatment. Spinal surgery on ANY child which

could

> have been avoided is a crime, but for my son, it isn't really

even a

> possibility because of his heart. It is so risky our

cardiologist

> doesn't think we should go down that route. This can't happen to

> another child in Australia.

>

> I hope you can help me. I am putting all the testimonials

together

> in a booklet complete with Dr Mehtas longitiudinal study and

DVD.

>

> If anyone would like to assist Australia in this cause, please

> contact me at briangchef@...

>

> Your testimonial would make such a difference to the kids of

> Australia. Apparantly their are at least 20-30 of them currently

not

> being treated with the RIGHT treatment.

>

> Take care everyone,

>

> thanks

>

September 8, 2006

Thankyou so much. I would love you to write whatever you feel would

help the cause. Do you need my email address again? It is

briangchef@...

Thankyou for all your support. You are wonderful!

> you are absolutely inspirational. My Moriah could not

benefit from casting (too late) and she also has heart

complications. She is almost 10 now. They wouldn't touch her here

either with that kind of treatment. has given us more

education and direction than the medical community.

>

> Gail

> Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> Mom to , 11/28/98 - ADHD/ODD/SID

> and , 02/02/02 - Congenital Scoliosis, VATER Association

(vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome,

Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital

3/21/05, VEPTR Expansions: 11/05 & 04/20/06

>

> Put a little 'TLC' into your scrapbook!

> Independent TLC Scrapbooking Instructor

> http:\\www.topline-creations.com\gail

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

September 8, 2006

Hi ,

Good luck collecting the information. Would it be useful for you to know from

everyone willing to share information some quick details like: Bridget, age at

first cast 3 yrs 6mths 38 dgree curve 13months casting last in cast measurement

8 degrees currently 28 degrees out of brace 10 degrees in brace at 5 yrs 7 mths

(has been diagnosed with connective tissue disorder) just so that you could put

a table of details together.

I'm sure everyone would be keen to share their details quickly so that you

have some real evidence to lend weight to your case for bringing serial plaster

casting to Australia.

Bert

moniquetiagarcia <moniquetiagarcia@...> wrote:

Thankyou so much. I would love you to write whatever you feel would

help the cause. Do you need my email address again? It is

briangchef@...

Thankyou for all your support. You are wonderful!

> you are absolutely inspirational. My Moriah could not

benefit from casting (too late) and she also has heart

complications. She is almost 10 now. They wouldn't touch her here

either with that kind of treatment. has given us more

education and direction than the medical community.

>

> Gail

> Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> Mom to , 11/28/98 - ADHD/ODD/SID

> and , 02/02/02 - Congenital Scoliosis, VATER Association

(vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome,

Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital

3/21/05, VEPTR Expansions: 11/05 & 04/20/06

>

> Put a little 'TLC' into your scrapbook!

> Independent TLC Scrapbooking Instructor

> http:\\www.topline-creations.com\gail

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

September 8, 2006

Good Luck to you !

My daughter's story is also on www.infantilescoliosis.org

We knew from the beginning that casting wouldn't be a " cure " for

Siobhan. But knew that as the brace wasn't helping, we couldn't just

sit and watch her curve progress.

What casting did for her, was to buy her valuable growing time,

until we felt she would be old enough for a final fusion OR until

something better came along!

It did!!!!! - And she is now doing fantastically with the VEPTR.

Keep us posted!

Jacki

Vancouver, BC Canada

> > you are absolutely inspirational. My Moriah could not

> benefit from casting (too late) and she also has heart

> complications. She is almost 10 now. They wouldn't touch her here

> either with that kind of treatment. has given us more

> education and direction than the medical community.

> >

> > Gail

> > Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> > Mom to , 11/28/98 - ADHD/ODD/SID

> > and , 02/02/02 - Congenital Scoliosis, VATER Association

> (vertebral and renal anomalies), Torticollis, Klippel Feil

Syndrome,

> Fused Ribs, First VEPTR Recipient at Cincinnati Children's

Hospital

> 3/21/05, VEPTR Expansions: 11/05 & 04/20/06

> >

> > Put a little 'TLC' into your scrapbook!

> > Independent TLC Scrapbooking Instructor

> > http:\\www.topline-creations.com\gail

> >

> > ---------------------------------

> > Stay in the know. Pulse on the new .com. Check it out.

> >

September 9, 2006

Hi Bert, you have so many great ideas, I read them all and act on

the immediately as they always seem to work!!!

So, I will present it something like this....The testimonial from

the parents first, and then a table showing the childs age, cast

number, degree of curvature and RVAD. (what do you think?)

Thanks Bert, you are a guardian angel for me!

Love

> > you are absolutely inspirational. My Moriah could not

> benefit from casting (too late) and she also has heart

> complications. She is almost 10 now. They wouldn't touch her here

> either with that kind of treatment. has given us more

> education and direction than the medical community.

> >

> > Gail

> > Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> > Mom to , 11/28/98 - ADHD/ODD/SID

> > and , 02/02/02 - Congenital Scoliosis, VATER Association

> (vertebral and renal anomalies), Torticollis, Klippel Feil

Syndrome,

> Fused Ribs, First VEPTR Recipient at Cincinnati Children's

Hospital

> 3/21/05, VEPTR Expansions: 11/05 & 04/20/06

> >

> > Put a little 'TLC' into your scrapbook!

> > Independent TLC Scrapbooking Instructor

> > http:\\www.topline-creations.com\gail

> >

> > ---------------------------------

> > Stay in the know. Pulse on the new .com. Check it out.

> >

September 9, 2006

Thanks but really I think you are awesome. You are actually getting

some people to listen to you which I never managed, other than physios. I am

looking forward to 's story going national.

I am sure every one here will be happy to help too as they are a great group

of people.

Take care

Bert

moniquetiagarcia <moniquetiagarcia@...> wrote:

Hi Bert, you have so many great ideas, I read them all and act on

the immediately as they always seem to work!!!

So, I will present it something like this....The testimonial from

the parents first, and then a table showing the childs age, cast

number, degree of curvature and RVAD. (what do you think?)

Thanks Bert, you are a guardian angel for me!

Love

> > you are absolutely inspirational. My Moriah could not

> benefit from casting (too late) and she also has heart

> complications. She is almost 10 now. They wouldn't touch her here

> either with that kind of treatment. has given us more

> education and direction than the medical community.

> >

> > Gail

> > Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> > Mom to , 11/28/98 - ADHD/ODD/SID

> > and , 02/02/02 - Congenital Scoliosis, VATER Association

> (vertebral and renal anomalies), Torticollis, Klippel Feil

Syndrome,

> Fused Ribs, First VEPTR Recipient at Cincinnati Children's

Hospital

> 3/21/05, VEPTR Expansions: 11/05 & 04/20/06

> >

> > Put a little 'TLC' into your scrapbook!

> > Independent TLC Scrapbooking Instructor

> > http:\\www.topline-creations.com\gail

> >

> > ---------------------------------

> > Stay in the know. Pulse on the new .com. Check it out.

> >

September 9, 2006

Hi Bert, about going National, I spoke to Jen (who's the journalist

for channel seven) and she thinks our position will be strengthened

if I can get some more families in Australia as evidence about this

treatment. How do you feel about being one of those families? I will

email you in more depth about it later, but it would help broaden

the story, so more people realise it affects many families and not

just .

Anyway, let me know, I'll email you soon.

Love

> > > you are absolutely inspirational. My Moriah could not

> > benefit from casting (too late) and she also has heart

> > complications. She is almost 10 now. They wouldn't touch her

here

> > either with that kind of treatment. has given us more

> > education and direction than the medical community.

> > >

> > > Gail

> > > Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> > > Mom to , 11/28/98 - ADHD/ODD/SID

> > > and , 02/02/02 - Congenital Scoliosis, VATER Association

> > (vertebral and renal anomalies), Torticollis, Klippel Feil

> Syndrome,

> > Fused Ribs, First VEPTR Recipient at Cincinnati Children's

> Hospital

> > 3/21/05, VEPTR Expansions: 11/05 & 04/20/06

> > >

> > > Put a little 'TLC' into your scrapbook!

> > > Independent TLC Scrapbooking Instructor

> > > http:\\www.topline-creations.com\gail

> > >

> > > ---------------------------------

> > > Stay in the know. Pulse on the new .com. Check it out.

> > >

September 10, 2006

I can e-mail you my daughter's story, your e-mail is briangchef at

what .com??

Thanks,

Joy (Mother of Sol)

> > you are absolutely inspirational. My Moriah could not

> benefit from casting (too late) and she also has heart

> complications. She is almost 10 now. They wouldn't touch her here

> either with that kind of treatment. has given us more

> education and direction than the medical community.

> >

> > Gail

> > Crafting Blog: http://itsmineitsallmine.blogspot.com/

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

> > Mom to , 11/28/98 - ADHD/ODD/SID

> > and , 02/02/02 - Congenital Scoliosis, VATER Association

> (vertebral and renal anomalies), Torticollis, Klippel Feil

Syndrome,

> Fused Ribs, First VEPTR Recipient at Cincinnati Children's

Hospital

> 3/21/05, VEPTR Expansions: 11/05 & 04/20/06

> >

> > Put a little 'TLC' into your scrapbook!

> > Independent TLC Scrapbooking Instructor

> > http:\\www.topline-creations.com\gail

> >

> > ---------------------------------

> > Stay in the know. Pulse on the new .com. Check it out.

> >

September 10, 2006

,

I just sent Jake's story to your personal e-mail address. I applaud your

efforts!! You are an inspiration!

Sincerely,

& Jake