Update from visit to Genetic Clinic

December 29, 2001

Just wanted to let you all know that we did take to the Genetic

Clinic on Dec. 13. As a reminder, these are the same doctors that

saw her when she was born 11 years ago. Our goal in returning was to

find out about any new testing that might be helpful with a

definitive diagnosis....... what we have been wanting for 11 years!

First we had to go through all we had done with testing in the

last 11 years, her weaknesses, strengths, our concerns, etc. When I

mentioned that we had not tested her chromosomes since her birth, and

that we would like to know more clearly about the % for MDS......

well, both doctors just looked at us. They then told us that 's

results of 11 years ago did not confirm MDS at all. If it had shown

MDS, that would have been easy to diagnos. Well, my husband and I

were both shocked, needless to say. I told them that we were told

that she had Mosaics. I then learned that for every syndrome, there

is a Mosaic, and there are mosaics for undetermined syndromes, which

is where we stand.

We don't know if this is good news, bad news, or doesn't really

matter news. We don't plan to change anything we are or have been

doing with and/or for . We just feel like we are in " limbo "

again. As a result of the fact that does not have MDS, I feel

it is my obligation to resign as the Treasurer of the IMDSA effective

immediately. I spoke with Kristy earlier this week and explained

this to her, and about my plans to resign. I want to offer my

sincerest apologies for the inconvience I know this will cause.

However, I know with all the wonderful people in the group, there is

someone out there that will be perfect for the position.

I will continue to read your postings, and wish the best to each of

you in the new year ahead of us. I know great things will happen for

IMDSA in 2002!

I want to let you know that are awaiting new test results from blood

that was taken from during our visit. The doctors had several

new tests that they felt like might be beneficial for . She is

also now a part of a " research project " being conducted by several of

the doctors in the clinic. We may not learn anything from that for

several months or even a year. I will let you know what we learn, if

we learn anything!

My very best to each of you, always!

Lindi Free Mother to (11), Kylie(8), and Madison who

1 year old yesterday!

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