Re: Conference

[Guest guest]

I have been trying to find the time to stop and say how much we enjoyed the

conference. It was so much fun to see all of the young children. It brought

back so many good memories. It was such a pleasure to get to know the other

parents also. I came away from it all realizing what a good sense of humor all

of the parents have. I wonder if that's one of the characteristics of a parent

belonging to a child with mds or is it the absolute joy of our children that

brings out the best in us. It was such a good feeling. And it was so good to

see the other young adults with mds. How charming they all are. I was very

impressed with all of them.

Also, I wanted to thank everyone for giving the opportunity to

speak at the conference. It makes her feel so good to share her story and her

coloring book, which in turn makes me so very happy. Thanks again for a

wonderful conference and thank you Kristy for all the hard work you did. I

can't believe you could pull off such an impressive conference from so far away.

We'll see you in your back yard next year.

- mom to (21 mds) & Audry

[Guest guest]

I totally agree! I wrote a brief synopsis of my trip for the group that help

fund my travels to VA. I thought it would be easier to share the letter with

you to show you how I felt about the whole conference. The following is part

of that letter.

" Hello! The conference was wonderful. It was so incredible to meet so many

families that were all alike. We all instantly bonded and were freinds. All

the kids reminded me of when she was little. It was amazing. It was

so encouraging to see young adults with MDS leading full lives. And dealing

with the same problems that has in a very manageable manner. It was

great! We had meals together, provided by the conference. That was alot of fun

enteracting with all the kids, that were having such a blast being with kids

all like themselves. They all seemed to be enjoying themselves so much. No

one was making fun of each other. It was fantastic. Next conference, if I

have to borrow money or beg for money, I am taking . She will have a

blast. This year they worked everything out so well with the Virginia

Commonwealth University that is doing a study on children with MDS. The doctors

and

medical students spent so much time with everyone, it was great. They had

medical

students do all the babysitting during the speakers. It was really neat.

The speakers were awesome. I learned so much. One doctor shared on positive

behavior for children with disabilities. He was so encouraging. The main

thing that I brought away from this confernce is that can be and do

whatever her heart desires; She is not limited by her disability, if she wants

to

do it, she can. I should never limit her by thinking or saying it can't be

done. I should always encourage her to TRY. "

Thank you everyone for being there at the conference and for being so

wonderful. It changed me.

, mother of (15 mds), 23 & 19

In a message dated 7/6/2004 9:39:04 PM Central Standard Time,

kcrdi@... writes:

I have been trying to find the time to stop and say how much we enjoyed the

conference. It was so much fun to see all of the young children. It brought

back so many good memories. It was such a pleasure to get to know the other

parents also. I came away from it all realizing what a good sense of humor all

of the parents have. I wonder if that's one of the characteristics of a

parent belonging to a child with mds or is it the absolute joy of our children

that

brings out the best in us. It was such a good feeling. And it was so good

to see the other young adults with mds. How charming they all are. I was very

impressed with all of them.

Also, I wanted to thank everyone for giving the opportunity to

speak at the conference. It makes her feel so good to share her story and her

coloring book, which in turn makes me so very happy. Thanks again for a

wonderful conference and thank you Kristy for all the hard work you did. I

can't

believe you could pull off such an impressive conference from so far away.

We'll see you in your back yard next year.

- mom to (21 mds) & Audry

[Guest guest]

,

Thank you for sharing your thoughts and feelings with the group! The biggest

thing for me was expressed by you also....The kids had a blast and NO ONE made

fun of each other!!

That, in itself, was worth the whole entire weekend! The kids had so much fun

and they bonded so well! I think they will have lasting friendships as the years

go by and they see eachother each year. It will be so great to see them all grow

up throughout the years too!

See you next year!

Kristy

MDAgos3608@... wrote:

I totally agree! I wrote a brief synopsis of my trip for the group that help

fund my travels to VA. I thought it would be easier to share the letter with

you to show you how I felt about the whole conference. The following is part

of that letter.

" Hello! The conference was wonderful. It was so incredible to meet so many

families that were all alike. We all instantly bonded and were freinds. All

the kids reminded me of when she was little. It was amazing. It was

so encouraging to see young adults with MDS leading full lives. And dealing

with the same problems that has in a very manageable manner. It was

great! We had meals together, provided by the conference. That was alot of fun

enteracting with all the kids, that were having such a blast being with kids

all like themselves. They all seemed to be enjoying themselves so much. No

one was making fun of each other. It was fantastic. Next conference, if I

have to borrow money or beg for money, I am taking . She will have a

blast. This year they worked everything out so well with the Virginia

Commonwealth University that is doing a study on children with MDS. The doctors

and

medical students spent so much time with everyone, it was great. They had

medical

students do all the babysitting during the speakers. It was really neat.

The speakers were awesome. I learned so much. One doctor shared on positive

behavior for children with disabilities. He was so encouraging. The main

thing that I brought away from this confernce is that can be and do

whatever her heart desires; She is not limited by her disability, if she wants

to

do it, she can. I should never limit her by thinking or saying it can't be

done. I should always encourage her to TRY. "

Thank you everyone for being there at the conference and for being so

wonderful. It changed me.

, mother of (15 mds), 23 & 19

In a message dated 7/6/2004 9:39:04 PM Central Standard Time,

kcrdi@... writes:

I have been trying to find the time to stop and say how much we enjoyed the

conference. It was so much fun to see all of the young children. It brought

back so many good memories. It was such a pleasure to get to know the other

parents also. I came away from it all realizing what a good sense of humor all

of the parents have. I wonder if that's one of the characteristics of a

parent belonging to a child with mds or is it the absolute joy of our children

that

brings out the best in us. It was such a good feeling. And it was so good

to see the other young adults with mds. How charming they all are. I was very

impressed with all of them.

Also, I wanted to thank everyone for giving the opportunity to

speak at the conference. It makes her feel so good to share her story and her

coloring book, which in turn makes me so very happy. Thanks again for a

wonderful conference and thank you Kristy for all the hard work you did. I

can't

believe you could pull off such an impressive conference from so far away.

We'll see you in your back yard next year.

- mom to (21 mds) & Audry