Re: A Small Percentage?? It seems like the numbers are changing considerably!!!

[Guest guest]

Becky,

Would you like me to add you to the Family Assistance List? Send me all your

info (Name, Address, how many attending, phone numbers,) and I'll add you to

the growing database.

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@...

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the

numbers

> > are changing considerably! !!

> > > To: MosaicDS@yahoogroup s.com

> > > Date: Tuesday, June 24, 2008, 10:30 PM

> > >

> > > How I wish someone could set up a booth at the NDSC convention

and

> > offer free

> > > reliable karyotypes!

> > >

> > > Judie, mom to Christi, 29 , and lots more

> > >

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

> > > Gas prices getting you down? Search AOL Autos for

> > > fuel-efficient used cars.

> > > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> > >

> > >

[Guest guest]

Hi Carmen,

    I thought it would be pretty interesting if you in fact were my friend.  Yes

it is nice to meet you as well.  I like the name Sydney that is cute and I am

sure she is as cute as her name is.  TTFN (TA TA FOR NOW)

Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

Hi ..I live in andria Virginia. I am originally from New York.

I have never lived in California. But I am truly amazed at your story.

I am surprised to know that there is another Carmen Naylor out there.

That is pretty interesting news. My daughter Sydney is my only child

and she is 19 months old. Nice to meet you.

>

> Hi Carmen,

>     Would you mind sharing with me where you live?  I am Becky Rowe's

mom living in Arizona.  I have a friend who lives in California and her

name is Carmen Naylor.  I am just curious if you are her.  I know my

friend Carmen has quite a few children but I do not know her enough to

know if she has had any children with MDS.  All her children are

grown.  It would be amazing if you are in fact my friend from YCC which

stands for Yucaipa Christian Church.  TTFN  Rowe

>

>

>

>

[Guest guest]

That's funny! When I was 12, I was in the hospital in a VERY SMALL TOWN. Those

were the days when they kept a list of all the patients in the hospital at the

front desk and anybody could go look at the list and see who was in the

hospital. My brother got bored and went down and looked at the list. When he

came back, he told us there were FOUR Knights in that hospital!

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of Carmen Naylor

Sent: Thu 6/26/2008 11:10 AM

To: MosaicDS

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably!!!

Hi ..I live in andria Virginia. I am originally from New York.

I have never lived in California. But I am truly amazed at your story.

I am surprised to know that there is another Carmen Naylor out there.

That is pretty interesting news. My daughter Sydney is my only child

and she is 19 months old. Nice to meet you.

>

> Hi Carmen,

> Would you mind sharing with me where you live? I am Becky Rowe's

mom living in Arizona. I have a friend who lives in California and her

name is Carmen Naylor. I am just curious if you are her. I know my

friend Carmen has quite a few children but I do not know her enough to

know if she has had any children with MDS. All her children are

grown. It would be amazing if you are in fact my friend from YCC which

stands for Yucaipa Christian Church. TTFN Rowe

>

>

>

>

[Guest guest]

LOL ! I remember those days!!! Ewww...we are showing our age

Kristy

 

 

Subject: RE: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS

Date: Thursday, June 26, 2008, 10:18 AM

That's funny! When I was 12, I was in the hospital in a VERY SMALL TOWN. Those

were the days when they kept a list of all the patients in the hospital at the

front desk and anybody could go look at the list and see who was in the

hospital. My brother got bored and went down and looked at the list. When he

came back, he told us there were FOUR Knights in that hospital!

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@ kenton.kyschools .us

____________ _________ _________ __

From: MosaicDS@yahoogroup s.com on behalf of Carmen Naylor

Sent: Thu 6/26/2008 11:10 AM

To: MosaicDS@yahoogroup s.com

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

Hi ..I live in andria Virginia. I am originally from New York.

I have never lived in California. But I am truly amazed at your story.

I am surprised to know that there is another Carmen Naylor out there.

That is pretty interesting news. My daughter Sydney is my only child

and she is 19 months old. Nice to meet you.

>

> Hi Carmen,

> Would you mind sharing with me where you live? I am Becky Rowe's

mom living in Arizona. I have a friend who lives in California and her

name is Carmen Naylor. I am just curious if you are her. I know my

friend Carmen has quite a few children but I do not know her enough to

know if she has had any children with MDS. All her children are

grown. It would be amazing if you are in fact my friend from YCC which

stands for Yucaipa Christian Church. TTFN Rowe

>

>

>

>

[Guest guest]

LOL! Anytime we had a family member in the hospital, my brother made it a hobby

of his to go down to the desk and check the list to see who was in there that we

knew. He would then go visit those people and come back and give us the full

report on their ailments, prognosis, and progress! And you WONDER why HIPPA was

passed! LOL! :-)

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of Kristy Colvin

Sent: Thu 6/26/2008 11:27 AM

To: MosaicDS

Subject: RE: A Small Percentage?? It seems like the numbers are changing

considerably!!!

LOL ! I remember those days!!! Ewww...we are showing our age

Kristy

From: , - Kenton County <cynthia.jones@...

<mailto:cynthia.jones%40kenton.kyschools.us> >

Subject: RE: A Small Percentage?? It seems like the numbers are changing

considerably!!!

To: MosaicDS <mailto:MosaicDS%40yahoogroups.com>

Date: Thursday, June 26, 2008, 10:18 AM

That's funny! When I was 12, I was in the hospital in a VERY SMALL TOWN. Those

were the days when they kept a list of all the patients in the hospital at the

front desk and anybody could go look at the list and see who was in the

hospital. My brother got bored and went down and looked at the list. When he

came back, he told us there were FOUR Knights in that hospital!

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@ kenton.kyschools .us

____________ _________ _________ __

From: MosaicDS@yahoogroup s.com on behalf of Carmen Naylor

Sent: Thu 6/26/2008 11:10 AM

To: MosaicDS@yahoogroup s.com

Subject: Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

Hi ..I live in andria Virginia. I am originally from New York.

I have never lived in California. But I am truly amazed at your story.

I am surprised to know that there is another Carmen Naylor out there.

That is pretty interesting news. My daughter Sydney is my only child

and she is 19 months old. Nice to meet you.

>

> Hi Carmen,

> Would you mind sharing with me where you live? I am Becky Rowe's

mom living in Arizona. I have a friend who lives in California and her

name is Carmen Naylor. I am just curious if you are her. I know my

friend Carmen has quite a few children but I do not know her enough to

know if she has had any children with MDS. All her children are

grown. It would be amazing if you are in fact my friend from YCC which

stands for Yucaipa Christian Church. TTFN Rowe

>

>

>

>

[Guest guest]

Im not sure yet how many will be going. I was gonna see as it gets

closer if Tim will be able to come with me and if not I was gonna see

if my sister wanted to go. If not it will just be Hailey and I. What

is the Family assistannce list? Where do I send the info. to you?

Thanks for your help.

> > > >

> > > > From: jhockelaol (DOT) com <jhockelaol (DOT) com>

> > > > Subject: Re: A Small Percentage?? It seems like the

> numbers

> > > are changing considerably! !!

> > > > To: MosaicDS@yahoogroup s.com

> > > > Date: Tuesday, June 24, 2008, 10:30 PM

> > > >

> > > > How I wish someone could set up a booth at the NDSC

convention

> and

> > > offer free

> > > > reliable karyotypes!

> > > >

> > > > Judie, mom to Christi, 29 , and lots more

> > > >

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

> > > > Gas prices getting you down? Search AOL Autos for

> > > > fuel-efficient used cars.

> > > > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> > > >

> > > >

[Guest guest]

Becky,

Just email me your name, address (both email & physical), phone number (home

& /or cell if you have one), Hailey's age as of next year and an approximation of

how many will be in your party (I can always edit it later, don't worry). And

that's it! I do the rest LOL

 

Blessings Abound,

(Becky) Rowe

Family Assistance Coordinator

IMDSA Conference July 10-12, 2009

rdrsfan31@...

Mom to Trey (8 ADHD) & Austin (5 MDS)

Re: A Small Percentage?? It seems like the

> numbers

> > > are changing considerably! !!

> > > > To: MosaicDS@yahoogroup s.com

> > > > Date: Tuesday, June 24, 2008, 10:30 PM

> > > >

> > > > How I wish someone could set up a booth at the NDSC

convention

> and

> > > offer free

> > > > reliable karyotypes!

> > > >

> > > > Judie, mom to Christi, 29 , and lots more

> > > >

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

> > > > Gas prices getting you down? Search AOL Autos for

> > > > fuel-efficient used cars.

> > > > (http://autos. aol.com/used? ncid=aolaut00050 000000007)

> > > >

> > > >

[Guest guest]

I totally agree with TTFN Rowe

Re: A Small Percentage?? It seems like the numbers are changing

considerably! !!

I am catching up on messages and just read the posts on this. I agree

that the numbers are most likely changing and increasing. There are for

sure a lot of individuals who are misdiagnosed. In fact, my daughter

Sydney was misdiagnosed at first. I found out about her diagnosis

through an amnio. The result was positive but they stated that not all

of the cells studied contained the extra chromosome 21. They explained

this as some the extra 21st chromosome must have some how gotten " lost "

during the testing on the " normal " cells. It was all so confusing and I

always knew for sure that something was not right and that she may

actually have MDS instead. After birth they basically refused to order

genetic blood testing for her. We fired the pediatrician! Our new

pediatrician referred us to a genetics doc. she was finally tested at

about 13 months and it was confirmed that she is Mosaic at about 14%. I

am sure there are many more stories like ours out there.

The conference sounds like a lot of fun. We are gonna try hard to make

it. This support group has really been helpful to me. Thanks to all of

your posts. I am truly grateful for this source.