Future Planning, Sophia and Olivia and new photos :-)

[Guest guest]

Hi all,

If any of you have the white paperback " Babies with Down syndrome " book by

Stray-Gundersen - I believe there is a brief section on estate

planning in there (I am going on memory though - I haven't had a chance to

confirm this).

Sophia, your message was very powerful and hit home. My experience, and my

emotions, in dealing with this unexpected diagnosis are ever-evolving. I

hear the same thing from other parents in our situation - there is a long

path to go down. No one can immediately handle or be happy about a

diagnosis of MDS. Most everyone, though, gets to a more positive place with

the passing of time. I think it gets easier to talk to others about it and,

overall, the positive starts to outbalance the negative. Anyway, good luck

with the geneticist - be forewarned however, that some of us have had bad

experiences with these folks. If you hear anything that makes you upset

please ignore it and come back and talk to us. Most of the people on this

list know much more about kids with Mosaic DS then your average geneticist

:-).

I have attached some new photos of the kids.

Dan,

Father to Luca, 3 Mosaic Translocation DS, and Sofia, nothing yet!