Re: New to RSS - 9 yr old daughter with RSS

[Guest guest]

Hi Danita,

I'm an adult with RSS... probably way too old to be much of a fun

email buddy for a 9-year old, but if either of you have any

questions, please feel free to email me at hu99am43@ hotmail.com

I grew up in Mentor, Ohio and went to The College of Wooster, so I

know Mansfield! (I'm now in graduate school in Iowa) There are a

few others on here from the Cleveland area -- hopefully they'll make

themselves known as well!

-Ana

(27 Years Old, 4'8 " )

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other

children

> that she can penpal with or meet that also have RSS. Until

recently,

> she thought she was alone or that she was the only one with RSS and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

[Guest guest]

Hi Danita,

I am mom to a two year old boy named , who has RSS. His

picture is listed in the photos section under R. ANyway, we

live relatively close to you. Do you know where Newark is? Anyway, I

know there is a big age difference, but I thought maybe you would

like someone to talk to! ) My email is rollison @core.com,

without the space between! You have to join MAGIC they are so

great. Plus, there is a convention every July where you can go and

meet al kinds of others with RSS! This year it is July 22-25. If

you would like to attend, I think you can still sign up! Pat is

's grandma, and she is located in the Cleveland area. I am

sure she will introduce her self when she gets on here.

Take care and email me anytime,

Jodi R.

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other

children

> that she can penpal with or meet that also have RSS. Until

recently,

> she thought she was alone or that she was the only one with RSS and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

[Guest guest]

Thanks Pat! Mansfield is about 85 miles south of Cleveland. We are

the mid point between Cleveland and Columbus.

I am so impressed with the responses I have gotten! We called the

MAGIC foundation today and we are attending the convention next

week! Deianira (Day-a-nair-a) is so excited; as am I! Even her

grandmother is coming!

This support group is great and I look forward to the responses. I

know I will be able to network at the convention as well and also

deal with some of my own emotions that I am sure the other parents

are experiencing as well.

Bless all of you!

> Hi Danita,

>

> My name is Pat, and I am G-ma to . B is only 2.5 yrs old

right now,

> so he wouldn't be much help as an email penpal, but we do live in

Ohio. We

> live up on the north coast, in Sheffield Lake. It's about 26 miles

west of

> Cleveland. Sad to say that I have no idea where Mansfield is!!

>

> I would love to help in any way I can.

> Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

[Guest guest]

Hi Danita,

I'm so glad that you found your way over here! Good luck with

everything and have fun at the convention. Also, please don't

hesitate to let me know if you think there's anything else I can help

you with.

~Hillary

21, RSS

[Guest guest]

Danita - I have an 8 1/2 year old daughter with RSS, although she is

no longer short and she doesn't have a lot of memories other than (I

remember people always picking me up.... " But she does have a lot

of inside issues about being skinny, etc.

My email address is magicrss@ mindspring.com, and my daughter's name

is . She is going into 3rd grade and she would LOVE a

penpal. Have your daughter write, and I will give it to !

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other

children

> that she can penpal with or meet that also have RSS. Until

recently,

> she thought she was alone or that she was the only one with RSS

and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can

talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

[Guest guest]

My daughter Destiny is 5 but can read and write, she might enjoy having a penpal

if your daughter wouldn't mind the age difference you can e-mail me privately at

my yahoo address sendmorecoffee@... if your daughter would be interested.

New to RSS - 9 yr old daughter with RSS

Hi all,

I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

girl who is just now really starting to struggle with the

her " smallness " as she calls it. I am looking to find other children

that she can penpal with or meet that also have RSS. Until recently,

she thought she was alone or that she was the only one with RSS and

that no one could really understand how she feels. I showed her

pictures of other children with RSS and we are signing up with the

Magic Foundation, but it is not yet real for her until she can talk

with other children that have RSS.

Can anyone help her in meeting or talking with other RSS children?

We are located in Mansfield, Ohio.

Sincerely,

Danita

[Guest guest]

Hi Danita

my name is kim and i'm an rss adult age 26 and 4'3 " and live in the UK. feel

free to email me anytime or your daughter can email anytime.I'm also on yahoo

messenger. I'm going to the convention in chicago and arrive on Wed afternoon.

pcpets wrote:

Hi Danita,

My name is Pat, and I am G-ma to . B is only 2.5 yrs old right now,

so he wouldn't be much help as an email penpal, but we do live in Ohio. We

live up on the north coast, in Sheffield Lake. It's about 26 miles west of

Cleveland. Sad to say that I have no idea where Mansfield is!!

I would love to help in any way I can.

Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

[Guest guest]

Hi Danita,

I AM doing fine and living a good life! I'm working on my PhD, got

married to a wonderful (6'2 " ) guy last summer, and just generally

being " normal. " As Sharon says, all I did was grow up with RSS...

my parents had to deal with the worst stuff...

So glad you'll be at the convention! I'll be there too (Thurs eve

and Friday 'til 5), so hopefully we'll have a chance to meet!

-Ana

(27yo, RSS, 4'8 " )

> Ana, Thank you so much for responding! I will probably take you up

on the offer to answer questions! She also needs to know that there

are adults out there with dwarfism that are doing fine and living a

good life...

>

> As for Ohio, I work in Wooster and live in Mansfield! :-)

Husband works in Richfield Ohio :-)

[Guest guest]

hi danita!!

my son that has rss is only 3, but i would gladly let her write to

him and i would write her back. feel free to email me at jlcals2003@

yahoo.com(no space after @). there are a couple of people on this

list in ohio, dont know how close they are to you though. we live

in nj.

jodie

(nicholas-6 nonrss, christopher-3 rss 24lbs 1.7oz 34 " periactin, ght

genotropin(on hold until convention),ADHD(possible), assmentry(left

side 1cm), johnathon-1yr nonrss)

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other

children

> that she can penpal with or meet that also have RSS. Until

recently,

> she thought she was alone or that she was the only one with RSS

and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can

talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

[Guest guest]

hi danita!

that is so great!! cant wait to meet you guys!! we are arriving on

wed morning from NJ!!

jodie

> > Hi Danita,

> >

> > My name is Pat, and I am G-ma to . B is only 2.5 yrs old

> right now,

> > so he wouldn't be much help as an email penpal, but we do live

in

> Ohio. We

> > live up on the north coast, in Sheffield Lake. It's about 26

miles

> west of

> > Cleveland. Sad to say that I have no idea where Mansfield is!!

> >

> > I would love to help in any way I can.

> > Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

[Guest guest]

My daughter just turned 11 and she would love to penpal with your daughter.

We live Richmond, VA. So far she has done pretty well coping with RSS but

would benefit greatly by talking/writing to your daughter. Just let us know

when your ready and we can get them started.

Thanks,

kelly

New to RSS - 9 yr old daughter with RSS

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other children

> that she can penpal with or meet that also have RSS. Until recently,

> she thought she was alone or that she was the only one with RSS and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

>

>

>

>

>

>

[Guest guest]

My daughter just turned 11 and she would love to penpal with your daughter.

We live Richmond, VA. So far she has done pretty well coping with RSS but

would benefit greatly by talking/writing to your daughter. Just let us know

when your ready and we can get them started.

Thanks,

kelly

New to RSS - 9 yr old daughter with RSS

> Hi all,

>

> I am a mom of a 9 yr old daughter with RSS. She is a vibrant young

> girl who is just now really starting to struggle with the

> her " smallness " as she calls it. I am looking to find other children

> that she can penpal with or meet that also have RSS. Until recently,

> she thought she was alone or that she was the only one with RSS and

> that no one could really understand how she feels. I showed her

> pictures of other children with RSS and we are signing up with the

> Magic Foundation, but it is not yet real for her until she can talk

> with other children that have RSS.

>

> Can anyone help her in meeting or talking with other RSS children?

> We are located in Mansfield, Ohio.

>

> Sincerely,

>

> Danita

>

>

>

>

>

>