Re: Shout it from the hilltops

[Guest guest]

Shouting with you. WAY TO GO MARIAN AND WAY TO GO CINDY. This has been a long

time coming and we are proud of n and know that you have battled for

her for so many years. Congrats. Veri & Jaye 17 poly

Shout it from the hilltops

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

It has been a very tough major, and she has worked in an internship the last two

years. Her health has been rocky the last four years, but that is nothing new

for us.

Many of you were with us during our darkest days when n was on life support

five years ago. Some of y'all even figured out how to call me in her room in

ICU. (I was very impressed with that feat.) I remember coming home at 2 or 3 in

the morning and updating her status for y'all. She has come a very long way from

those dark days.

There is another young man on this list who has battled systemic jra for most of

his life, and if he isn't graduating in the next few weeks, he is very close to

graduation. His name is Josh. Georgina's son. I had the privilege of meeting him

last summer. He is a fine, young man, and Georgina should be very proud of him.

(n, 22, systemic)

[Guest guest]

Way to go n.  We are very proud of her as well.  I very much remember

when she had MAS and how much we all prayed for her.  What an awesome updat,

thank you for sharing with us!

Beth & Hannah, 14, OA, HMJS, Vit d deficiency, asthma and allergies

" We cannot control the wind, but we can adjust our sails "

From: Price <bc.price@...>

JRA List < >

Sent: Monday, May 16, 2011 10:38 AM

Subject: Shout it from the hilltops

 

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

It has been a very tough major, and she has worked in an internship the last two

years. Her health has been rocky the last four years, but that is nothing new

for us.

Many of you were with us during our darkest days when n was on life support

five years ago. Some of y'all even figured out how to call me in her room in

ICU. (I was very impressed with that feat.) I remember coming home at 2 or 3 in

the morning and updating her status for y'all. She has come a very long way from

those dark days.

There is another young man on this list who has battled systemic jra for most of

his life, and if he isn't graduating in the next few weeks, he is very close to

graduation. His name is Josh. Georgina's son. I had the privilege of meeting him

last summer. He is a fine, young man, and Georgina should be very proud of him.

(n, 22, systemic)

[Guest guest]

Congratulations to n! That is wonderful and I know you are so very proud of

her.

It's amazing when our kids do such great things!

Way to go n!

, Kaylee, 8 Ext pauci, Uveitis, ADHD, ODD

Shout it from the hilltops

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

It has been a very tough major, and she has worked in an internship the last two

years. Her health has been rocky the last four years, but that is nothing new

for us.

Many of you were with us during our darkest days when n was on life support

five years ago. Some of y'all even figured out how to call me in her room in

ICU. (I was very impressed with that feat.) I remember coming home at 2 or 3 in

the morning and updating her status for y'all. She has come a very long way from

those dark days.

There is another young man on this list who has battled systemic jra for most of

his life, and if he isn't graduating in the next few weeks, he is very close to

graduation. His name is Josh. Georgina's son. I had the privilege of meeting him

last summer. He is a fine, young man, and Georgina should be very proud of him.

(n, 22, systemic)

[Guest guest]

Congratulations to all!! I do remember those dark days and in a way, seeing

" our " kids reach their milestones is heartwarming for all of us. Many of the

folks on the list have been here for me as well, although we did not have the

MAS issue, but I have always felt their support, those still here and those we

haven't heard from in a while (hint Robbin, among others, we would love an

update!).

What an amazing feat that n is in such a male dominated field. I wish her

every success!

You have every right to shout out loud!!! Michele ( 24, spondy)

From: [mailto: ] On Behalf Of

Price

Sent: Monday, May 16, 2011 10:39 AM

JRA List

Subject: Shout it from the hilltops

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

It has been a very tough major, and she has worked in an internship the last two

years. Her health has been rocky the last four years, but that is nothing new

for us.

Many of you were with us during our darkest days when n was on life support

five years ago. Some of y'all even figured out how to call me in her room in

ICU. (I was very impressed with that feat.) I remember coming home at 2 or 3 in

the morning and updating her status for y'all. She has come a very long way from

those dark days.

There is another young man on this list who has battled systemic jra for most of

his life, and if he isn't graduating in the next few weeks, he is very close to

graduation. His name is Josh. Georgina's son. I had the privilege of meeting him

last summer. He is a fine, young man, and Georgina should be very proud of him.

(n, 22, systemic)

[Guest guest]

Yes, where is Robbin? I was just thinking of her.

Sent from my iPhone

On May 16, 2011, at 9:21 AM, " Tepper, Michele " <MTepper@...> wrote:

> Congratulations to all!! I do remember those dark days and in a way, seeing

" our " kids reach their milestones is heartwarming for all of us. Many of the

folks on the list have been here for me as well, although we did not have the

MAS issue, but I have always felt their support, those still here and those we

haven't heard from in a while (hint Robbin, among others, we would love an

update!).

> What an amazing feat that n is in such a male dominated field. I wish her

every success!

> You have every right to shout out loud!!! Michele ( 24, spondy)

>

> From: [mailto: ] On Behalf Of

Price

> Sent: Monday, May 16, 2011 10:39 AM

> JRA List

> Subject: Shout it from the hilltops

>

> I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is nothing

new for us.

>

> Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home at 2

or 3 in the morning and updating her status for y'all. She has come a very long

way from those dark days.

>

> There is another young man on this list who has battled systemic jra for most

of his life, and if he isn't graduating in the next few weeks, he is very close

to graduation. His name is Josh. Georgina's son. I had the privilege of meeting

him last summer. He is a fine, young man, and Georgina should be very proud of

him.

> (n, 22, systemic)

>

>

[Guest guest]

Every now and then I send Robbin a personal e-mail to prodd her to talk to me

and give update. She is always so very very very VERY busy with family and all.

Shout it from the hilltops

>

> I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is nothing

new for us.

>

> Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home at 2

or 3 in the morning and updating her status for y'all. She has come a very long

way from those dark days.

>

> There is another young man on this list who has battled systemic jra for most

of his life, and if he isn't graduating in the next few weeks, he is very close

to graduation. His name is Josh. Georgina's son. I had the privilege of meeting

him last summer. He is a fine, young man, and Georgina should be very proud of

him.

> (n, 22, systemic)

>

>

[Guest guest]

Hooray! Hooray! Congratulations to you both. Such strength and determination

rewarded!

Kirsten, mom to , 7, spondy

>

> I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a

cap and tassel at her graduation. The engineers will all be wearing hard hats.

She is one of only a handful of women in the program. I think there are like

4-5 women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is nothing

new for us.

>

> Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home at

2 or 3 in the morning and updating her status for y'all. She has come a very

long way from those dark days.

>

> There is another young man on this list who has battled systemic jra for most

of his life, and if he isn't graduating in the next few weeks, he is very close

to graduation. His name is Josh. Georgina's son. I had the privilege of

meeting him last summer. He is a fine, young man, and Georgina should be very

proud of him.

> (n, 22, systemic)

>

[Guest guest]

That is so fantastic, !!!  I am always amazed at how fast it seems that

other people's children grow up.  I have images of n in my mind, and I

always revert to seeing her as a teenager... and then I have to remind myself

that she is in college... and I can't believe that she is now even complete with

that journey!  ( I always imagine Josh at 14....) What a tremendous

accomplishment that she has achieved, to have completed such a tough major in

such a short amount of time, with extra hurdles to tackle along the way.

 

You are a remarkable mother and woman - and your daughter's tenacity and

strength is a tribute to you.  Congrats to you all!

 

Colleen (mom to Caitlin, 13, systemic)

From: Price <bc.price@...>

Subject: Shout it from the hilltops

" JRA List " < >

Date: Monday, May 16, 2011, 8:38 AM

 

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

It has been a very tough major, and she has worked in an internship the last two

years. Her health has been rocky the last four years, but that is nothing new

for us.

Many of you were with us during our darkest days when n was on life support

five years ago. Some of y'all even figured out how to call me in her room in

ICU. (I was very impressed with that feat.) I remember coming home at 2 or 3 in

the morning and updating her status for y'all. She has come a very long way from

those dark days.

There is another young man on this list who has battled systemic jra for most of

his life, and if he isn't graduating in the next few weeks, he is very close to

graduation. His name is Josh. Georgina's son. I had the privilege of meeting him

last summer. He is a fine, young man, and Georgina should be very proud of him.

(n, 22, systemic)

[Guest guest]

Yes she is often taking care of someone around her. I sure hope she remembers to

take care of herself once in awhile and put her feet up. Not likely with her

though! Thanks for the quick Robbin update, Veri Michele

From: [mailto: ] On Behalf Of

veristroud@...

Sent: Monday, May 16, 2011 11:54 AM

Subject: Re: Shout it from the hilltops

Every now and then I send Robbin a personal e-mail to prodd her to talk to me

and give update. She is always so very very very VERY busy with family and all.

Shout it from the hilltops

>

> I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a cap

and tassel at her graduation. The engineers will all be wearing hard hats. She

is one of only a handful of women in the program. I think there are like 4-5

women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is nothing

new for us.

>

> Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home at 2

or 3 in the morning and updating her status for y'all. She has come a very long

way from those dark days.

>

> There is another young man on this list who has battled systemic jra for most

of his life, and if he isn't graduating in the next few weeks, he is very close

to graduation. His name is Josh. Georgina's son. I had the privilege of meeting

him last summer. He is a fine, young man, and Georgina should be very proud of

him.

> (n, 22, systemic)

>

>

[Guest guest]

Awesome news...you must be so, so proud. Thank you so much for sharing her/your

story with us newbies...you give us one thing this awful disease tries to take

away...HOPE!

What an accomplishment!!!

& , 7.5, poly...nystagmus....SPD

Sent from my iPhone

[Guest guest]

OK I am going to have to start reading the list entries with a box of tissues

handy!

AWESOME NEWS!! WAY TO GO!!!!

Re: Shout it from the hilltops

" " < >

> Awesome news...you must be so, so proud. Thank you so much for

> sharing her/your story with us newbies...you give us one thing

> this awful disease tries to take away...HOPE!

>

> What an accomplishment!!!

>

> & , 7.5, poly...nystagmus....SPD

>

> Sent from my iPhone

>

[Guest guest]

Thanks for sharing this - and congrats to n (and Josh) on such a

wonderful achievement!! I wasn't here on the list in n's darkest days 5

years ago. I cannot, cannot imagine what that was like. As always, I want to

thank you for sharing n's story with those of us new here. You give me

such hope for a bright future for . nn (, 10, systemic)

>

> I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a

cap and tassel at her graduation. The engineers will all be wearing hard hats.

She is one of only a handful of women in the program. I think there are like

4-5 women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is nothing

new for us.

>

> Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home at

2 or 3 in the morning and updating her status for y'all. She has come a very

long way from those dark days.

>

> There is another young man on this list who has battled systemic jra for most

of his life, and if he isn't graduating in the next few weeks, he is very close

to graduation. His name is Josh. Georgina's son. I had the privilege of

meeting him last summer. He is a fine, young man, and Georgina should be very

proud of him.

> (n, 22, systemic)

>

[Guest guest]

Awesome awesome awesome ! Way to go n! [=D>]

Now she'll have to buy some of the purple safety boots that Steel Blue

<http://www.purpleboots.com.au/page/page/show?id=2362482%3APage%3A28>

make here in Oz as a fundraiser for breast cancer (another one of those

things that runs in our family). Designed by female engineers and

très cool. I wore some for my wedding believe it or not (the pull

on, non-steel-cap-toe version).

More info about the Purple Boot Brigade here

<http://www.purpleboots.com.au/> . Steel Blue do have US suppliers, so

maybe you can find them over there. []

Jo

Bayly, 9, eoJIA

>

> I want to shout it from the hilltops. We are within a couple of weeks

of n's college graduation. She will be a Civil Engineer. She

won't wear a cap and tassel at her graduation. The engineers will all

be wearing hard hats. She is one of only a handful of women in the

program. I think there are like 4-5 women in the engineering program.

>

> It has been a very tough major, and she has worked in an internship

the last two years. Her health has been rocky the last four years, but

that is nothing new for us.

>

> Many of you were with us during our darkest days when n was on

life support five years ago. Some of y'all even figured out how to call

me in her room in ICU. (I was very impressed with that feat.) I

remember coming home at 2 or 3 in the morning and updating her status

for y'all. She has come a very long way from those dark days.

>

> There is another young man on this list who has battled systemic jra

for most of his life, and if he isn't graduating in the next few weeks,

he is very close to graduation. His name is Josh. Georgina's son. I

had the privilege of meeting him last summer. He is a fine, young man,

and Georgina should be very proud of him.

> (n, 22, systemic)

>

[Guest guest]

You should shout it from the hilltops, ! n has accomplished what

she set out to accomplish and has not let JA interfere. She is proof that

life with JA can still be wonderful. Congratulations to n! To you and

your husband, too~~~ your love and support have clearly played a huge role

in n's successes!!

Liz

From: [mailto: ] On Behalf

Of Price

Sent: Monday, May 16, 2011 11:39 AM

JRA List

Subject: Shout it from the hilltops

I want to shout it from the hilltops. We are within a couple of weeks of

n's college graduation. She will be a Civil Engineer. She won't wear a

cap and tassel at her graduation. The engineers will all be wearing hard

hats. She is one of only a handful of women in the program. I think there

are like 4-5 women in the engineering program.

It has been a very tough major, and she has worked in an internship the last

two years. Her health has been rocky the last four years, but that is

nothing new for us.

Many of you were with us during our darkest days when n was on life

support five years ago. Some of y'all even figured out how to call me in her

room in ICU. (I was very impressed with that feat.) I remember coming home

at 2 or 3 in the morning and updating her status for y'all. She has come a

very long way from those dark days.

There is another young man on this list who has battled systemic jra for

most of his life, and if he isn't graduating in the next few weeks, he is

very close to graduation. His name is Josh. Georgina's son. I had the

privilege of meeting him last summer. He is a fine, young man, and Georgina

should be very proud of him.

(n, 22, systemic)