New

[Guest guest]

>

>

> , I love Chai. What are your proportions and do you think it

tastes better than your average black/green KT?

>

Ya know I love Chai and Roobios together and Chai is just about my

favorite tasting tea, but I tried this for a KT brew and I personally

don't like it.. funny to like it so much one way but not the other. I

really like green tea KT and maybe my taste buds are bias

Lorraine

[Guest guest]

>

>

> , I love Chai. What are your proportions and do you think it

tastes better than your average black/green KT?

>

Ya know I love Chai and Roobios together and Chai is just about my

favorite tasting tea, but I tried this for a KT brew and I personally

don't like it.. funny to like it so much one way but not the other. I

really like green tea KT and maybe my taste buds are bias

Lorraine

[Guest guest]

Lorraine - Did you use regular black tea in that chai too? Or is Chai black

tea?... yeah, I think it is. So you just didn't like the taste as much? I

wondered that myself because Chai is by far my favorite tea, in a KT I might

think it tastes strange. I love green tea (especially jasmine) so I think I'll

start with that and after I get a couple of SCOBY's going then maybe I'll

experiment with Chai. Thanks for your input.

[Guest guest]

Hi Hanni,

Welcome to the US! I grew up in Germany. My Mom was German and my Dad was an

American soldier. I actually have a cousin in Augsburg named Hanni who I haven't

spoken to in MANY years. I don't even know how to get in touch with her.

You wouldn't be from Augsburg by chance?

I know it's a stretch.....

I hope you enjoy KT as much as we do. I am waiting, at the moment, for a Scoby

from one of our members here. I drank KT faithfully for three years and was the

healthiest I'd ever been. Never caught a cold, or headache, had lot's of energy

and a great sense of well being.

I can't wait to get back on the program.

Again,

welcome!

Roxanne

EXPECT A MIRACLE

[Guest guest]

---

Hi, and welcome....you posted just right:) Im Valarie, mom to four

kids, three of them with CVID, and all on IVIG monthly. If he hates

SCIG, can he not go back to IVIG? I know of another mom on this board

whose son hated SCIG and went back to IVIG instead. My daughter doesnt

even want to try SCIG......the thought of it being in our home freaks

her out....she wants to leave the " sick " stuff at the hospital, and Im

going to respect that, for now. My sons love our infusion rm at the

hospital......which probably sounds goofy, but they do have a lot of

really neat, fun stuff to do during infusion.

It is really hard to see our kids sick......so, so hard. But its

incredible, isnt it? how some of this difficulty molds them into very

strong young people......makes me wonder as adults, what incredible

things they will do!

In , " happy2beeeeeme " <happy2beeeeeme@...> wrote:

>

> I'm not quite sure how to post in these things so I figured I'd do

> this and I'm sure if I did it wrong someone will correct me.

> My name is and I have a 14 year old son . I also have

> a 16 year old daughter Hope. And I've been married for over 16

> years!!! Hope was DX with PIDD when she was 13 mo old. She outgrew

> it when she was 2 1/2- yeah. My son presented MUCH differently so he

> wasn't DX until he was 6. He was DX with CVID. He had 5 pneumonias,

> countless ear and sinus infections. He's been on I.V. therapy since

> then; however, in Jan we switched to sub Q which he HATES.

> He would like to stop treatment but he has two new diagnosis of

> atalectasis and emphysema. He's had asthma since he was a baby.

> It is very difficult to have a child with a disease such as this as

> I'm sure everyone knows.

> If I had to choose one word to describe how we are feeling it would

> be- FRUSTRATION. I'm also sad at how much my son has had to suffer

> with Sub Q; especially since he ended up with cellulitis after the

> 2nd infusion.

> OK- I'm done. There that is my son in a reader's digest version.

> Oh but wait- one more very important thing. is an awesome

> kid. He plays on the 8th grade basketball team. He played on the

> 7th and 8th grade football teams. He has a wonderful sense of

> humor. He is so tender-hearted he makes me cry sometimes. He does

> great in school and wants to attend Harvard Law School- he has high

> dreams.

> OK now I'm done.

> And thank you for reading my little book- LOL.

>

[Guest guest]

We can go back to IVIG; however, when he goes to the clinic for his

infusions, he has really bad side-effects. Such as shock/ passing

out. We don't know why but he does. Before instituting Sub Q, he

was getting it at home with is home health nurse. He did much better

with it at home and with it being I.V.

It seems to me that since we've switched to Sub Q, he has become

depressed. He hates Fridays now; the day he chose to receive

treatment.

I just obtained case worker so I sure am hoping something good will

happen soon!

> >

> > I'm not quite sure how to post in these things so I figured I'd

do

> > this and I'm sure if I did it wrong someone will correct me.

> > My name is and I have a 14 year old son . I also

have

> > a 16 year old daughter Hope. And I've been married for over 16

> > years!!! Hope was DX with PIDD when she was 13 mo old. She

outgrew

> > it when she was 2 1/2- yeah. My son presented MUCH differently

so he

> > wasn't DX until he was 6. He was DX with CVID. He had 5

pneumonias,

> > countless ear and sinus infections. He's been on I.V. therapy

since

> > then; however, in Jan we switched to sub Q which he HATES.

> > He would like to stop treatment but he has two new diagnosis of

> > atalectasis and emphysema. He's had asthma since he was a baby.

> > It is very difficult to have a child with a disease such as this

as

> > I'm sure everyone knows.

> > If I had to choose one word to describe how we are feeling it

would

> > be- FRUSTRATION. I'm also sad at how much my son has had to

suffer

> > with Sub Q; especially since he ended up with cellulitis after

the

> > 2nd infusion.

> > OK- I'm done. There that is my son in a reader's digest version.

> > Oh but wait- one more very important thing. is an

awesome

> > kid. He plays on the 8th grade basketball team. He played on

the

> > 7th and 8th grade football teams. He has a wonderful sense of

> > humor. He is so tender-hearted he makes me cry sometimes. He

does

> > great in school and wants to attend Harvard Law School- he has

high

> > dreams.

> > OK now I'm done.

> > And thank you for reading my little book- LOL.

> >

>

[Guest guest]

Hello- my son gets IVIG at home and it works well for him. Sub Q is a

little intimidating to me (and he's afraid of shots), so we're not

going mess with what we have now! I was wondering, if he has a bad

reaction to his IVIG, couldn't they try a different brand? I'm not as

knowledgeable as some of the people on this board, but I thought

different brands might have less effects. Mark was on Gammagard until

he was 3, then he was switched to Gammunex because it was easier to

tolerate. He's been on it for 3 years and has no side effects at all.

, mom to Mark, CVID, 6

>

> We can go back to IVIG; however, when he goes to the clinic for his

> infusions, he has really bad side-effects. Such as shock/ passing

> out. We don't know why but he does. Before instituting Sub Q, he

> was getting it at home with is home health nurse. He did much better

> with it at home and with it being I.V.

> It seems to me that since we've switched to Sub Q, he has become

> depressed. He hates Fridays now; the day he chose to receive

> treatment.

> I just obtained case worker so I sure am hoping something good will

> happen soon!

>

>

>

[Guest guest]

---When he did IVIG, was it monthly? I know of some kids who get upset

by the *weekly* reminder of their illness.....maybe that is what is

getting him down?

valarie

In , " happy2beeeeeme " <happy2beeeeeme@...> wrote:

>

> We can go back to IVIG; however, when he goes to the clinic for his

> infusions, he has really bad side-effects. Such as shock/ passing

> out. We don't know why but he does. Before instituting Sub Q, he

> was getting it at home with is home health nurse. He did much better

> with it at home and with it being I.V.

> It seems to me that since we've switched to Sub Q, he has become

> depressed. He hates Fridays now; the day he chose to receive

> treatment.

> I just obtained case worker so I sure am hoping something good will

> happen soon!

>

>

>

>

> > >

> > > I'm not quite sure how to post in these things so I figured I'd

> do

> > > this and I'm sure if I did it wrong someone will correct me.

> > > My name is and I have a 14 year old son . I also

> have

> > > a 16 year old daughter Hope. And I've been married for over 16

> > > years!!! Hope was DX with PIDD when she was 13 mo old. She

> outgrew

> > > it when she was 2 1/2- yeah. My son presented MUCH differently

> so he

> > > wasn't DX until he was 6. He was DX with CVID. He had 5

> pneumonias,

> > > countless ear and sinus infections. He's been on I.V. therapy

> since

> > > then; however, in Jan we switched to sub Q which he HATES.

> > > He would like to stop treatment but he has two new diagnosis of

> > > atalectasis and emphysema. He's had asthma since he was a baby.

> > > It is very difficult to have a child with a disease such as this

> as

> > > I'm sure everyone knows.

> > > If I had to choose one word to describe how we are feeling it

> would

> > > be- FRUSTRATION. I'm also sad at how much my son has had to

> suffer

> > > with Sub Q; especially since he ended up with cellulitis after

> the

> > > 2nd infusion.

> > > OK- I'm done. There that is my son in a reader's digest version.

> > > Oh but wait- one more very important thing. is an

> awesome

> > > kid. He plays on the 8th grade basketball team. He played on

> the

> > > 7th and 8th grade football teams. He has a wonderful sense of

> > > humor. He is so tender-hearted he makes me cry sometimes. He

> does

> > > great in school and wants to attend Harvard Law School- he has

> high

> > > dreams.

> > > OK now I'm done.

> > > And thank you for reading my little book- LOL.

> > >

> >

>

[Guest guest]

We have " family movie night " on SCIG night. It helps. we also let him

stay up a little bit later ... he thinks he is getting away with

something.

Peace be with you,

Pattie

Shwachman-Diamond Syndrome Information Blog:

<http://www.shwachman.blogspot.com> www.shwachman.blogspot.com

Homeschooling Blog: <http://www.catholicmomof3.blogspot.com>

www.catholicmomof3.blogspot.com

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Thursday, February 28, 2008 8:53 AM

Subject: Re: new

---When he did IVIG, was it monthly? I know of some kids who get upset

by the *weekly* reminder of their illness.....maybe that is what is

getting him down?

valarie

In groups (DOT) <mailto:%40> com,

" happy2beeeeeme " <happy2beeeeeme@...> wrote:

>

> We can go back to IVIG; however, when he goes to the clinic for his

> infusions, he has really bad side-effects. Such as shock/ passing

> out. We don't know why but he does. Before instituting Sub Q, he

> was getting it at home with is home health nurse. He did much better

> with it at home and with it being I.V.

> It seems to me that since we've switched to Sub Q, he has become

> depressed. He hates Fridays now; the day he chose to receive

> treatment.

> I just obtained case worker so I sure am hoping something good will

> happen soon!

>

>

>

>

> > >

> > > I'm not quite sure how to post in these things so I figured I'd

> do

> > > this and I'm sure if I did it wrong someone will correct me.

> > > My name is and I have a 14 year old son . I also

> have

> > > a 16 year old daughter Hope. And I've been married for over 16

> > > years!!! Hope was DX with PIDD when she was 13 mo old. She

> outgrew

> > > it when she was 2 1/2- yeah. My son presented MUCH differently

> so he

> > > wasn't DX until he was 6. He was DX with CVID. He had 5

> pneumonias,

> > > countless ear and sinus infections. He's been on I.V. therapy

> since

> > > then; however, in Jan we switched to sub Q which he HATES.

> > > He would like to stop treatment but he has two new diagnosis of

> > > atalectasis and emphysema. He's had asthma since he was a baby.

> > > It is very difficult to have a child with a disease such as this

> as

> > > I'm sure everyone knows.

> > > If I had to choose one word to describe how we are feeling it

> would

> > > be- FRUSTRATION. I'm also sad at how much my son has had to

> suffer

> > > with Sub Q; especially since he ended up with cellulitis after

> the

> > > 2nd infusion.

> > > OK- I'm done. There that is my son in a reader's digest version.

> > > Oh but wait- one more very important thing. is an

> awesome

> > > kid. He plays on the 8th grade basketball team. He played on

> the

> > > 7th and 8th grade football teams. He has a wonderful sense of

> > > humor. He is so tender-hearted he makes me cry sometimes. He

> does

> > > great in school and wants to attend Harvard Law School- he has

> high

> > > dreams.

> > > OK now I'm done.

> > > And thank you for reading my little book- LOL.

> > >

> >

>

[Guest guest]

I understand how the Plasma/HGH works on tendons and ligaments because they

are soft tissue and it has something to adhere to. Perhaps if people have

some cartilage, it might rejuvenate the existing cartilage. I have no idea how

it works, but it would be great if it did. It sounds a little like the

" Regenexx " company in Denver. They have a study going on now for tendons. He

claims

that it already works on arthritis. He uses mostly mesenchymal stem cells

from bone marrow and then has the stem cells multiplied vastly in his lab. The

one for dogs supposedly works on arthritis anywhere from 1 to 3 years.

Anne

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

This is the answer to my prayers if it can repair cartilage from

meniscis tears.

" Its potential, say proponents, could range from applications in the

repair of bones, ligaments, cartilage and nerves, "

I wonder if I could get treated with this stuff at Stanford now?

Hollie

> I haven't posted on this group for years, but when I last

participated

> prolotherpahy and HGH were being talked about. I just read of new

> technique that works with tendons and *might* work with cartilage as

> well.

>

>

http://www.stanfordhospital.com/newsEvents/newsReleases/2008/mendingTen

d

> ons

>

> If this pans out, this is a major breakthrough. I wouldn't believe

them

> on this if they weren't part of Stanford University!

>

[Guest guest]

hi allegra

 

im lauramechelle i got type 2 and im 18

u have msn or anything be good to talk

From: prncessadkusa <prncessadkusa@...>

Subject: new

Date: Wednesday, 29 October, 2008, 5:23 AM

Hey everyone,

My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

I love music, reading, and writing. I don't know what else I should

write but I look forward to meeting new people .

[Guest guest]

Welcome Allegra!

Where are you from? I'm in Cali and have type 3.

I hope you enjoy it here!

 

From: prncessadkusa <prncessadkusa@...>

Subject: new

Date: Tuesday, October 28, 2008, 9:23 PM

Hey everyone,

My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

I love music, reading, and writing. I don't know what else I should

write but I look forward to meeting new people .

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

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

[Guest guest]

Hi Allegra,

What a gorgeous name!

I'm Amy, 29, and have type I/II. I've been with my husband, Will, for

13 years and we have two kids, ages 5 & almost 3.

On Oct 29, 2008, at 11:43 AM, Joy wrote:

> Welcome Allegra!

> Where are you from? I'm in Cali and have type 3.

> I hope you enjoy it here!

>

>

>

>

>

> From: prncessadkusa <prncessadkusa@...>

> Subject: new

>

> Date: Tuesday, October 28, 2008, 9:23 PM

>

> Hey everyone,

> My name's Allegra and I'm 16. I was diagnosed with SMA II when I was

> 1.

>

> I love music, reading, and writing. I don't know what else I should

> write but I look forward to meeting new people .

>

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

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

[Guest guest]

Hi Allegra! I'm from Wisconsin and I have SMA II. Welcome and I

am looking forward to getting to know you!

[Guest guest]

Welcome Allegra! My name is Kimi and I'm 30yrs old (wow I'm getting old)

w/SMA 3 but functionally a weak to mild type 2 from PA. I use a power WC, have

a trach and a vent (which I use while sleeping), a G/J tube, pacemaker,

severe scoliosis, motility issues, GERD, and chronic abdominal pain. I know,

its

a LONG list . I also use the Cough Assist for lung expansion.

Now to the fun stuff....I enjoy hanging out with my great friends, shopping

(when I have the $$), mini scrap booking, music, and Dunkin Donuts Iced Mocha

Lattes. I have a BS in Bio/Chem from Immaculata Univ and almost finished my

Masters in Bioethics at UPENN. My fiance passed away over a year ago so at

the moment I just volunteer for the state by serving on a committee who

advise the Governor and the Secretary of Public of Welfare on the Medicaid

Waivers

which allow disabled citizens to live independently in the community.

It's great to have you. I remember being 16 and it being the beginning of

an exciting and crazy chapter in my life. Do you plan to go to college? Feel

free to jump in and ask any ?'s you might have!

Take Care,

Kimi

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

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

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 10/29/2008 12:24:12 A.M. Eastern Daylight Time,

prncessadkusa@... writes:

Hey everyone,

My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

I love music, reading, and writing. I don't know what else I should

write but I look forward to meeting new people .

**************Plan your next getaway with AOL Travel. Check out Today's Hot

5 Travel Deals!

(http://travel.aol.com/discount-travel?ncid=emlcntustrav00000001)

[Guest guest]

Hi Allegra and welcome to the group! My name is Kendra and I'm 25

years old with SMA type II. I live in California with my husband Joe.

We've been together for seven years, but recently married just three

months ago. I work for my city government in policy analysis. I like

to travel and loooooove to play power soccer!

<3Kendra

>

> Hey everyone,

> My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

> I love music, reading, and writing. I don't know what else I should

> write but I look forward to meeting new people .

>

[Guest guest]

Hi Amy,

They say I have type II acute. I like music, reading, and writing. That's so

sweet you and your husband have been together so long. I'm begining to wonder if

I will ever meet someone for me. I know I'm only 16 but I'm kind of tired of

waiting around for someone, especially when like all my friends are in love. Was

having kids very difficult? Are you very weak?

~Allegra

P.S. Thanks for the compliment

Sent from my iPhone

On Oct 29, 2008, at 8:52 AM, Amy <blueyedaze@...> wrote:

Hi Allegra,

What a gorgeous name!

I'm Amy, 29, and have type I/II. I've been with my husband, Will, for

13 years and we have two kids, ages 5 & almost 3.

On Oct 29, 2008, at 11:43 AM, Joy wrote:

> Welcome Allegra!

> Where are you from? I'm in Cali and have type 3.

> I hope you enjoy it here!

>

>

>

>

>

> From: prncessadkusa <prncessadkusa@...>

> Subject: new

>

> Date: Tuesday, October 28, 2008, 9:23 PM

>

> Hey everyone,

> My name's Allegra and I'm 16. I was diagnosed with SMA II when I was

> 1.

>

> I love music, reading, and writing. I don't know what else I should

> write but I look forward to meeting new people .

>

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

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

[Guest guest]

I'm from Washington. How old are you? What do you like to do?

On Oct 29, 2008, at 8:43 AM, Joy <j0yeuxx@...> wrote:

Welcome Allegra!

Where are you from? I'm in Cali and have type 3.

I hope you enjoy it here!

From: prncessadkusa <prncessadkusa@...>

Subject: new

Date: Tuesday, October 28, 2008, 9:23 PM

Hey everyone,

My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

I love music, reading, and writing. I don't know what else I should

write but I look forward to meeting new people .

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

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

[Guest guest]

I'm from Washington. How old are you? What are your hobbies?

Sent from my iPhone

On Oct 29, 2008, at 9:22 AM, " sweetleo03 " <sweetleo03@...> wrote:

Hi Allegra! I'm from Wisconsin and I have SMA II. Welcome and I

am looking forward to getting to know you!

[Guest guest]

Hi Allegra!

I love your name. I am , 19 years old, from Florida. I have type 3.

Hi Allegra! I'm from Wisconsin and I have SMA II. Welcome and I

am looking forward to getting to know you!

[Guest guest]

Hi Kendra,

I'm just curious what was having kids like? I'm a very acute type II. I'd just

like to know what it's like. I'm pretty sure I don't want any though.

~Allegra

On Oct 29, 2008, at 11:08 AM, " Kendra " <kendranicole@...>

wrote:

Hi Allegra and welcome to the group! My name is Kendra and I'm 25

years old with SMA type II. I live in California with my husband Joe.

We've been together for seven years, but recently married just three

months ago. I work for my city government in policy analysis. I like

to travel and loooooove to play power soccer!

<3Kendra

>

> Hey everyone,

> My name's Allegra and I'm 16. I was diagnosed with SMA II when I was 1.

> I love music, reading, and writing. I don't know what else I should

> write but I look forward to meeting new people .

>

[Guest guest]

Allegra,

I love all of those things, too! What are your favorite bands/artists?

Yeah, we've been together forever. LOL! We've basically grown up

together, though. I can almost guarantee all your friends aren't in

love. You've got plenty of time to find the right person, trust me.

The pregnancies were rough, but I survived. I had to have c-sections

under general anesthesia for both which sucked. I'd say raising them

has been the most challenging part thus far! They're crazy, loud, and

very active. I'd say I'm very weak, yes. I need help with basically

everything except using the computer (thanks to being able to control

my macbook with my ipod touch) and drive my chair.

Anything else you wanna know, just ask!

amy

On Oct 29, 2008, at 4:44 PM, Allegra wrote:

> Hi Amy,

> They say I have type II acute. I like music, reading, and writing.

> That's so sweet you and your husband have been together so long. I'm

> begining to wonder if I will ever meet someone for me. I know I'm

> only 16 but I'm kind of tired of waiting around for someone,

> especially when like all my friends are in love. Was having kids

> very difficult? Are you very weak?

>

> ~Allegra

>

> P.S. Thanks for the compliment

>

> Sent from my iPhone

>

> On Oct 29, 2008, at 8:52 AM, Amy <blueyedaze@...> wrote:

>

> Hi Allegra,

>

> What a gorgeous name!

>

> I'm Amy, 29, and have type I/II. I've been with my husband, Will, for

> 13 years and we have two kids, ages 5 & almost 3.

>

> On Oct 29, 2008, at 11:43 AM, Joy wrote:

>

> > Welcome Allegra!

> > Where are you from? I'm in Cali and have type 3.

> > I hope you enjoy it here!

> >

> >

> >

> >

> >

> > From: prncessadkusa <prncessadkusa@...>

> > Subject: new

> >

> > Date: Tuesday, October 28, 2008, 9:23 PM

> >

> > Hey everyone,

> > My name's Allegra and I'm 16. I was diagnosed with SMA II when I was

> > 1.

> >

> > I love music, reading, and writing. I don't know what else I should

> > write but I look forward to meeting new people .

> >

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

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds, ages and beliefs So

> all

> > members most be tolerant and respectful to all members.

> >

> > * Some adult language and topics (like sexual health, swearing..)

> may

> > occur occasionally in emails. Over use of inappropriate language

> will

> > not be allowed. If your under 16 ask your parents/gaurdian before

> you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated to the topics of

> > spinal muscular atrophy, health, and the daily issues of the

> disabled.

> >

> > Post message:

> > Subscribe: -subscribe

> > Unsubscribe: -unsubscribe

> >

[Guest guest]

Allegra,

I haven't had any children yet, so you should ask the SMA mommies and

daddies on the list. Perhaps one day Joe and I will have children of

our own, but we are not ready to take this step quite yet.

<3Kendra

> >

> > Hey everyone,

> > My name's Allegra and I'm 16. I was diagnosed with SMA II when I

was 1.

> > I love music, reading, and writing. I don't know what else I should

> > write but I look forward to meeting new people .

> >

>

>

>

>

>

>

>

>

[Guest guest]

Hi Allegra

Im Adam, 23y guy, SMA 2 from Sweden. If u ever wanna chat add me at

adistheone2002@...

Everyone else who wanna add me,go ahead;)

I eat n breath music 24/7, n has a passion for graphic design wich i do for a

living as i run a company with a friend of mine:)

Take care

/Adam

>

> From: prncessadkusa <prncessadkusa@...>

> Subject: new

>

> Date: Tuesday, October 28, 2008, 9:23 PM

>

> Hey everyone,

> My name's Allegra and I'm 16. I was diagnosed with

> SMA II when I was 1.

>

> I love music, reading, and writing. I don't know what

> else I should

> write but I look forward to meeting new people .

>

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

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and

> beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health,

> swearing..) may

> occur occasionally in emails. Over use of inappropriate

> language will

> not be allowed. If your under 16 ask your parents/gaurdian

> before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the

> topics of

> spinal muscular atrophy, health, and the daily issues of

> the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>